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My PCS Recovery Story

Overview

If you're suffering from Post Concussion Syndrome, it can be scary. You might be wondering if you'll ever be the same again. The incredible slowness of the recovery process might be making you depressed. And you might be having moments of doubt. I did too. But in the end, after 13 months, I was able to fully recover. So keep faith, because there is hope. If your injury is like mine, it can be healed.

This website designed to help you speed up your recovery and avoid the mistakes and dead-ends I explored. I'll explain what I tried, what worked, what didn't, and who I went to for help. It's a bit of a long read, so if you want something that gets right to the point check out the quick tips page. And if you don't even have enough time for that, here is the punch line: call the UPMC Sports Concussion Clinic in Pittsburgh right now and get an appointment. They're the people who helped me get better, when no one else could. They took my Humana PPO insurance, so all I had to do was get there and pay a few deductibles.

Disclaimer: This is not medical advice. Please consult your doctor for medical advice regarding your concussion.  





The Car Accident: April 2014

To begin with, my injury was sustained during a car accident. I live in an old historic neighborhood where the roads are narrow and everyone is very serious about landscaping. I was just two blocks from my home when a driver, who was probably texting, completely ignored a stop sign and slammed into my car at top speed, without even hitting the brakes. I say top speed, but he was probably only going about 30 mph.  

An ambulance came and I was checked out and given a clean bill of health. A police officer actually suggested to me that I go home and have a drink to relax, which I did and was later told by a doctor that I trusted that that was a terrible suggestion.  


Initial Symptoms

The next morning, I felt fine. I had no symptoms and went about my daily activities. But about 24 hours after the accident, I started to feel dizzy all of a sudden while shopping at a Walgreen's. After a few moments, I wasn't even sure I was going to be able to make it back to the car. My mind started to fog up and my thinking became very slow. It took everything I had to make my purchase and go back to the car. Luckily, I wasn't driving.  


Emergency Room Visit

Later that day, my wife took me to the emergency room. Having never felt like this before, it seemed like I was dying. My consciousness seemed to be fading. I could remember what year is was, but I had to think hard, and thinking hard started to really make me tired. 

I was given a CAT scan, which came back fine. This is no surprise, because all they could really tell with a CAT scan is if my brain was bleeding. And luckily, it wasn't. But there was clearly a brain injury. 

They sent me home with a hydrocodone prescription, which later a knowledgeable doctor told me was a bad idea. I wound up taking the hydrocodone to help me sleep. I assumed I could sleep the whole thing off, but of course that didn't work.    


Primary Care Physician Visit & New Symptoms: Late April 2014 

My symptoms continued to get worse and about four days later I went to see my primary care physician. He said that all of the symptoms should clear in a few weeks. (IF ONLY!) He sent me to get an MRI, which is more detailed than a CAT scan, but it showed nothing special. All that meant was that the brain injury was not severe, which you could generally tell from my behavior anyway.

The symptoms I had over the next three to four weeks were:
  1. Vision problems
    I became very sensitive to light and started wearing sunglasses almost all the time. This is a classic problem. I also couldn't watch TV or even read a book without causing head pain and fatigue.
      
  2. Headaches
    The headaches were usually brought on by trying to use my eyes and were centered around my right eye. I started taking Tylenol and Etodolac, an older NSAID, which worked very well for my headache. Eventually, I was taking a full dose of Tylenol, Etodolac, and Advil in order to keep the pain at bay. So long as I stayed ahead of it, the pain would not be very bad at all. Once I did try switching from Etodolac to Alieve, but that did not work for me at all.
     
  3. General Fatigue
    At the beginning, I could hardly do anything and this was all tied up with my vision. At its worst, I had to keep my eyes closed every other hour in order to hold off the headaches. After a while, this led to depression and anxiety, because it wasn't getting any better.

    My adaptation for my symptoms wound up being "resting" in the guest room every hour or two for one or two hours. I would just sit there in a dark room and all I could do to pass the time was daydream, which as a 40 year old, I hadn't done much of for a long time. But it helped pass the time and in a way, was good for me.
      
  4. Sudden Severe Mental Fatigue
    Every once in a while, I would try to push through and go about my normal activity or a friend or family member would push me to do the same. This was always a mistake. In all of these cases, either I or the family member didn't understand my limits, which makes sense because I didn't look injured. The injury is invisible.

    Anyway, to give you an example, after about three weeks I went with my wife to visit her family and then we went to "save the turtles" (a bunch of them were trying to cross a busy road). I drove to the golf course where this was happening, but then asked my wife to drive. The saving the turtles thing lasted a lot longer than I imagined and I was way overdue for a rest. But it was decided that the family should go on a walk through the hilly golf course, since it was such a beautiful day. But this was a big mistake too, because not only did I not rest but I also got my heart rate up climbing those hills, and this it turns out was a trigger for my "Brain on Fire / Sudden Severe Mental Fatigue" episodes. During these episodes, it was like I could feel my brain inside my skull.

    So I had "an episode" and the difference between this and just getting tired was that I was just completely down in bed for a couple of days. That's how long it would take for me to get back to a point where I only had to rest every other hour or so and had the strength to talk to people. 
    
     
Local Neurologist: Early May 2014
After my symptoms lasted beyond what was normal (two to four weeks I believe), my primary doctor sent me to a neurologist. The only one with an opening anytime soon was able to see me the next week. But this did not go well. My neurologist was on the verge of retirement and clearly hadn't been reading up on concussions. At one point, he asked if I even knew what the definition of a concussion was? I asked to hear his definition and he said it was an injury to the brain caused by something hitting the head, where the person loses consciousness. Of course, everything I had read on reputable websites, like the Mayo Clinic, said that you didn't have to lose consciousness to have a concussion (mild TBI). I had already told him I hadn't lost consciousness, so it seemed like he was thinking it was all in my head, so to speak... So in the end, this went nowhere. To see any other neurologist would take months because they all had a long waiting list.

(Note that I live in a mid-sized city - San Antonio, Texas. People living in tier-1 cities, might have better luck getting an appointment with a good neurologist faster.)


Local Sports Concussion Clinics and Specialists: Early May 2014
Ironically, I live in a city with some of the most advanced concussion treatment in the world at the Wilford Hall Medical Center / Defense and Veterans Brain Injury Center. But they only treat military personnel, so it was water, water everywhere, but not a drop to drink. This led me to call the local sports concussion clinic and they said they didn't see auto accident patients, so again I reached a dead end. Simply finding qualified care was looking very difficult.

In retrospect, I should have told the local sports concussion clinic that I could private pay. What I later learned was that some doctors don't like auto accident patients because they don't get their payments for quite some time, if at all. Plus, they have to deal with a law office, which apparently is even more tedious and annoying that dealing with an insurance company.


Local Optometrist and Ophthalmologist
My vision problems continued to be my worst symptom, so I saw a local optometrist and ophthalmologist. They were good at what they did, but really had no clue when it came to treating an eye injury resulting from a concussion. The optometrist gave me eye drops that were pointless and the ophthalmologist essentially thought I was being a baby. I told him I never had these headaches before and he said he gets them all the time and it's just part of the aging process. (Right...) He did give me computer glasses and those helped, but at the same time he and the optometrist both decided to increase my eyeglass prescription. This, it turns out, was the exact opposite thing that should have been done. So in general, they made the situation worse.


Not Returning to Work for a While
By this time, I was out of work for a month. Luckily for me, I was the owner and CEO of 50 person software company, so I could take time off and not dock my own pay. This spared me from enormous stress, and having seen a close friend go through something similar as the sole breadwinner, all I can say is that I can't imagine how that is. My heart goes out to you if you're in that situation.

In the end, I announced to the company that I wasn't coming back until I was better.


Drifting with No Direction and Depression, then Eureka!:
Mid May 2014

At this point I was about one month into my ordeal. With no prospect for getting qualified care anytime soon and my recovery going nowhere, I started to get depressed, and I had a few moments where I lost faith and despaired. It takes a lot to get that kind of response from me, but the prospect of being mentally disabled for the rest of my life - yeah that did it... I was also noticing some general anxiety bubbling up, which is not something I've really ever had to deal with. In fact, I was in a bit of denial that I had any anxiety, because I didn't want to admit it to myself or anyone else.

I tried driving a few times and found that I was "hyper-vigilant." I didn't mention it before, but my two small children were in the accident with me and were also suffering from PCS. This was probably part of my problem. It was mild PTSD. (My children's situation is a whole other story, but to cut to the chase, they fully recovered in about 7 months.)

One month in, I could spend maybe 30-60 minutes, spread out throughout the day, on a computer without it hurting too badly. So I spent that time doing online research and ultimately came across an article by Dr. Eric Singman. Sadly, I can no longer find this article online, but it was the first document I found that described most of my symptoms, and more importantly, it described treatments for each. (Here is another of his articles)

My wife called Dr. Singman's office at Johns Hopkins and he was kind enough to see me right away. All I had to do was get to Baltimore, which is what I did. They took my Humana PPO insurance, so all I had to do was pay the copay's.


Something New: An Anxiety Attack 
The night before the trip to Baltimore, I became more and more agitated. I was scared of getting on the plane and fairly irrational. This is totally out of character for me as I have traveled all across the globe with no problem. Up until then, I even considered a plane ride with no children somewhat relaxing.

But I had a full on panic attack and the only way I could get control of myself was by walking and walking and walking around in circles in our home. That calmed me down enough to get to sleep. The next day at the airport I was similarly anxious. I wanted to sit by a window, near the front of the plane and we were able to do that. But then when they closed the doors, I wanted to get off and was very close to getting up and asking to leave. My wife gave me a touching speech about how we needed to get to Baltimore to get through this, and that helped almost as much as the Xanax I had with me, which a dentist had once prescribed for me but that I had never used. It finally came in handy! Once I took that, the flight was no problem...

  
Johns Hopkins Visit: Late May/Early June 2014
Dr. Singman is a wonderful human being. He is a neuro-ophthalmologist who trains students at Johns Hopkins at the General Eye Service of the Wilmer Eye Institute. Dr. Singman has a lot of experience treating vision problems associated with concussions and at that point, my vision problems were still the worst of all of my symptoms. I could still hardly use my eyes. 
(His article againHere is what I was diagnosed with:
  
  1. Vision problems related to my concussion
    Explanation: Here is a paraphrase from memory. Your brain is sort of floating in your head. But your brain is attached to your eyes by the optical nerves. What happened (especially because the car flipped) was your brain was jostled and jerked around and that yanked on and damaged your optical nerves and the muscles that control them. Until they heal, your vision won't be the same and it could take months.  
    Solution: In the meantime, to reduce the strain on my eyes, he would reduce my eyeglass prescription. I wouldn't see things as clearly as before, but it also wouldn't be a major source of fatigue. And this is exactly as it turned out. My eyes slowly got better over about four months and three intermediary prescriptions, until they arrived at a new normal. (I ultimately had to use progressives and computer glasses, whereas before I only needed my glasses for longer distance vision, like for walking or driving.)
     
  2. Occipital Neuralgia (Definition)
    Explanation: This was actually the real source of my headaches. The occipital nerve in my head was injured during the accident and was causing headaches that run from the back of my right ear all the way to the center of my right eye. When Dr. Singman saw me, he pushed gently somewhere on the back of my neck or head and he set off a headache. (This is the way you check for it, I am told...)
    Solution: I was seen within 4 days by Dr. Christo at Johns Hopkins. First, I was given a cream that I was supposed to put on "the affected areas," which meant where it hurt. When I did this, the pain went away pretty quickly. It was amazing! This was diagnostic, so they gave me a "nerve block" injection on both sides of my head. They also gave me a prescription for more of the cream. The idea was that the injection would work for 2-4 weeks and then I could use the cream. If that wasn't enough, they could do more injections and even an ablation, which I believe would actually damage the nerve a little to reduce the pain (it would also reduce the feeling you have on part of your scalp.) In the end, the single injection and cream worked for me. I needed the cream for several months, and missing a dose of that or the Etodolac/Tylenol combo that I took regularly would result in the pain coming back. But over about two months, it went away and I slowly stopped using the cream and the NSAIDs.
    > > See image of cream prescription > >
     
  3. Convergence Insufficiency (Definition)
    Explanation: My eyes were having trouble focusing on things close to my face. I had a pretty bad case, impressing Dr. Singman at how far I had "over-achieved" in this area.
    Solution:  I was prescribed a computer based program to correct it. I worked on it, but much later found a much easier system that uses beads and some string. (The brock string) And note here, that this problem did not get fully resolved for me and turned up much later as a lingering problem. I think this is because the computer system was cumbersome and difficult. The brock method was faster and better and is what I used to eventually fix the problem. I highly recommend it. And if you need encouragement to do the program, I suggest seeing a vision therapist.
       
  4. Referral to a Neurologist to Check My Balance / Vestibular Function
    Before I explain what happened here, it is important to note that when I was there, Johns Hopkins didn't have an actual Concussion Clinic. Dr. Singman was simply making it all happen out of the goodness of his heart. He knew how a concussion clinic should function and was helping me see all the specialists I needed to see right away. But what this means is that the neurologist I saw who checked my balance isn't someone who dealt with concussions on a daily basis. That's probably why he missed my balance issues, which were subtle, but there. And this was s big miss, because fixing my vestibular problems is what ultimately was needed for me to get completely better. So I was given a clean bill of health in this regard, but that was a mistake.
      
  5. Referral to a Neuropsychologist and Further Treatment at Hopkins
    I also saw a neuropsychologist at Hopkins. She was good at pushing me to test my boundaries and to reduce my rests. That helped me find my new limits after the treatments I had received. But she seemed to think that if I just kept pushing, I should be well again in about four weeks. This raised my expectations, but it didn't turn out that way, because I still had some underlying physical problems. And at the time, nothing was being done to resolve those problems. (Eight months later it turned out my fatigue was being caused by lingering convergence insufficiency and mostly vestibular / balance problems.) So my take here is that a neuropsychologist can be helpful, if he or she is aided by medical professionals working on the underlying physical problems. There may be some psychological things going on, but without fixing the physical problems, you'll never get around to addressing the psychological problems anyway.   
  
  
Leaving Baltimore: Late June 2015 
I wound up staying in Baltimore for almost a month. I could have gone back home after one week and returned for my follow ups after another three weeks, but between my lingering anxiety and the fact that staying or going cost about the same (since we were talking about four plan tickets counting my wife and children), I wound up staying there. 

My vision started getting better and I was hardly using sunglasses after about four weeks with my new glasses. This also meant I could do more research online. I was still anxious to find answers, because although I was getting better, the pace was still ridiculously slow and there was plenty of back sliding. Plus if I exerted myself too much, I still had "an episode" of sudden severe mental fatigue.


Trying New Things at Home
I found this article about possible therapies for PCS, and it helped give me more ideas about what to try. In the end, what I focused on during this time was the "Buffalo Protocol," which is a treadmill program. This was the first thing that started getting me feeling better. But in retrospect, I should have been looking for a true concussion clinic that would take me. In any case, here are some of the results I got from some of the items on the list. If I don't mention an item, it's because I didn't try it. 

  1. Psychological Treatment
    I got a little of this at Hopkins, and it helped a little, but did not address the root causes. The assumption was I would recover slowly on my own, so I just needed support. This may be true, but if I had stayed on the trajectory I was on, I would probably still be experiencing symptoms. What I really needed was a faster recovery trajectory.
        
  2. Cognitive Rest 
    I did A LOT of this and it only helped on the margins. It didn't solve the underlying problem.
      
  3. Amantadine
    I didn't try it and when I was finally properly evaluated, I was told that it would not have been good for me, because I was "all wound up and anxious" and the amantadine would reinforce that. The people who ultimately got me all the way better (UPMC), said it was used more for people who are listless and lack energy.
     
  4. Vestibular Rehabilitation Therapy
    At this time, I assumed I had no balance problems, because I never felt dizzy. Boy was I wrong! This is the thing I should have checked, but I had already been checked at Hopkins and I couldn't find a local facility for it (though I didn't try very hard). I was more focused on the treadmill program.
     
  5. Epsom Salts
    Tried it. No effect in my case.
      
  6. Diet Supplements
    I tried vitamin D and magnesium and, eventually, even progesterone! (More on progesterone later...) None of it made any difference.
        
  7. Aerobic Exercise / Buffalo Protocol
    When I heard about the Buffalo Protocol, I decided I'd just get on the treadmill and give it a try. I felt confident doing this because it was so well explained online (example 1, example 2, example 3).  The first time I had really felt good since the concussion was after my fourth or fifth time on the treadmill. And feeling good for the first time in so long got me hooked. I became a treadmill fanatic, ultimately getting in the best shape of my life. This is not what healed me, but it did get me moving forward, if very slowly.  
  
  
New NOT-NORMAL Focused on the Buffalo Protocol:
July 2014-December 2015
I spent about eight months on the Buffalo Protocol, because it was the only thing that helped me make progress (three months on, two months off due to weird circumstances, then three months on again). It can help, but for my injuries, it proved to be too one dimensional. But it really is worth a try, if it is part of an overall multidimensional treatment program (which it wasn't for me, which is probably why it didn't work).  

When I first heard about it, I read all the articles I could, got the equipment I needed (a wrap around the chest heart rate monitor and watch and a treadmill with an incline option), and started working. I also emailed Dr. Leddy and he was kind enough to email me back and correspond. I tried getting an appointment to see him and at first I got one, three weeks out. But this was right after Baltimore, so I lost steam and didn't go. When I tried again, it was sports season and I wasn't able to get an appointment. So my advice is, if you can get an appointment, definitely go! If I had actually been able to see him and be evaluated regularly, it would have helped a lot.  

I don't think it's necessary for me to explain the whole program and all of the details since that is so well done online (see below). 
But I will explain my home routine and what I learned about what worked best for me.



Disclaimer: Talk to your doctor about this program before trying any of this at home. This is not medical advice.   

  1. First I had to get a baseline test for myself, so I got a polar heart rate monitor and a used treadmill from Craigslist for $250 (yes, I am cheap!) with an electric incline option. This is important, because as I got more in shape, I needed a major incline to get my heart rate up. Also, keep in mind that the heart rate monitors on treadmills are mostly worthless and inaccurate (the kind where you hold onto a bar to get a reading, etc.).
     
  2. My baseline on my first time out was 150 BPM, meaning that at that heart rate I started to feel the "rubber band around my head" feeling and got a little dizzy. So I set my target heart rate at 120 for 20 minutes (80% of max). To get there, I would walk for about five minutes to warm up, then increase the speed and start jogging. Once I saw my heart rate at 120 BPM, I would start the timer and go for 20 minutes. I'd have to slow down every once in a while and tried to range between 115 and 125 so that my average over the 20 minutes would be about 120.
      
  3. To keep my BPM at the right number, I wouldn't increase or decrease the speed usually. I'd just change the incline. That affects your heart rate a lot more.
     
  4. My schedule was to do this twice a day, six days a week. Although it was only a 20 minute run, with prep time, warm up time, run time, and then clean up time (I was dripping in sweat at the end of it), it took about an hour or an hour and 15 minutes to complete. The clean up was the real time drag, because it took 20 minutes just to stop sweating after the run.   
      
  5. Watching a video on an iPad while running really helped me get through it (especially an action sequence that demands your attention). I was in great shape before the accident, but I was never much of a runner, so having a distraction while running really helped. But after about 12 minutes, "runner's high" usually kicked in anyway, and I didn't feel much discomfort after that.
     
  6. The recommendation is to re-evaluate yourself after about two weeks, find your new baseline, and set a new target. Dr. Leddy has some very aggressive targets as time goes by and I tried those, but they really wreaked havoc. They made me feel bad, so I reduced them by a lot. And this, I think in retrospect, was a mistake. I should have stayed in my "discomfort zone."

    When I finally got to UPMC, they wanted me to find my "discomfort zone" and repeatedly put myself in it until I got comfortable with it again. I had become fearful of setting off the "sudden severe mental fatigue" and being forced to do nothing for days and possibly suffer a setback or backslide. So now, I would say if you are serious about trying this, get to Dr. Leddy or someone who is trained on implementing this protocol and follow their advice, even and especially if it takes you out of your comfort zone. (Though I would recommend that you try UPMC first if you don't have vision problems and Dr. Singman first, if you do have vision problems.)
      
      
  7. So my goal for increasing my BPM wound up being to go up by 1 BPM every fourth day (e.g. 3 days at 145, then 3 days at 146). Again, in retrospect, the big jumps suggested by Dr. Leddy would probably be a better way to go. Perhaps this program would have fully cured me if I followed those guidelines...
     
  8. There were many ups and downs during this time. I was making slow, steady progress in general, but because life was happening all around me, I had some significant and some small setbacks. But it was good having a plan, seeing steady progress, and being able to see some light at the end of the tunnel.
       
  9. I was able to return to work half time in August. I still had to rest every other hour, but with my eyes doing much better and headache gone, I could do a lot of my job.
      
  10. One setback in particular put me back about two months during this period, so keep that in mind when you think about me spending eight months on this program. It was actually three months, then out for about two months, and then starting over again in December, 2014.      
       
  11. As time went on, Dr. Leddy suggested I go to 90% of my baseline rather than 80%. (I only emailed him about three times with specific questions, which he was nice enough to answer.) And as the months drew on, I was getting a higher and higher BPM with no symptoms (dizziness, rubber band around the head feeling). Plus I could outrun and outlast my small children, which was something new. I was also getting close to my total max heart rate for my age. I was 40 at the time, so it was 180 BPM * 90% = 162 BPM.
     
  12. By January, 2015 I was at 162 BPM, which was 90% of my max. Even my buddies who do marathons were impressed! But I still wasn't all the way better. By mid-February, I was at 166 BPM or 92% of my total max. But, again, I still wasn't all the way better.
     
  13. Then in February, 2014 I had another big setback. I had never done so much cardio in my life and I was pushing my body really hard. And what I found was that I had a potassium deficiency. In fact, one night I had to be rushed to the hospital and when they saw my potassium reading, they wondered how I was still alive. After many tests, the best theory was that I was sweating it all out. So the lesson here is, drink Gatorade G2 while on this program and get plenty of legumes and bananas. Replenish those minerals!
      
  14. And by this time I had decided that I had maybe gotten all I could get out of the Buffalo Protocol, so the only thing left on the horizon for me at the time was to "send in the quacks."  
 
  
Working Part Time & Special Circumstances: MAJOR STRESS
I also want to note here that there were some special stressors in my life that contributed to my slow recovery. The biggest is that my kids were having PCS symptoms too, and there was not much I could do about it. The other was that I was selling the company I had built for 12 years. In fact, I had just signed a letter of intent for the sale a few days before the accident. So my family's entire financial future was at stake here and in the back of everybody's mind was, would I be able to continue to support the family? Was I kaput? And at the time, it was certainly no laughing matter.

PCS in adults and financial / career stress go hand in hand. The key here is to recognize that it will affect your recovery and treating either the root cause of the stress or at very least, treating the symptoms while you recover, is something that has to be done. There is only so much you can "suck up" in this situation.

  
Send in the Quacks!: February 2015
In December of 2014, I decided that if I wasn't better very soon, I'd start looking at some of the stranger remedies I'd heard about - the kind of things your doctor might roll his or her eyes at. In fact, at that point, if someone had told me that a "curandera" could cure me, I might have given it a shot! (Note that a curandera is a Mexican witch doctor. I'm a Mexican-American, but even so, it would take a lot of desperation for me to try a medical procedure that involved ritually killing a chicken... Or whatever they do...)

In general, I tried to stay disciplined and avoid looking at all of the outlandish claims you'd find on the Internet. I stuck to respectable websites like the Mayo Clinic and Hopkins. But if standard medicine couldn't help me after eight months, then it was time to "send in the quacks" and see what they could do. Here are some of the things I considered and / or tried. And note that most of these things aren't actually quackery, but they are just outside the usual scope of medicine or have not been fully proven in a double blind study or not fully accepted by the medical establishment.
  1. Progesterone
    This is a hormone usually associated with women, but that is actually in women and men. There have been lots of studies trying to figure out if progesterone can help prevent concussion symptoms (link 1, link 2). There was even a stage III trial of this, but I don't think it was successful and either way, the test was giving progesterone to patients immediately after a head injury, not eight months after the fact. Nevertheless, you see companies selling it online as a PCS remedy. So to make a long story short, I tried it and it did nothing for me.
     
  2. Acupuncture
    I was told that this could be a remedy for the "mental fogginess" and that people who get chemo use acupuncture to cure symptoms very similar to mine. Well, I never tried this. It seemed more "out there" than neurofeedback, so that is what I tried.
      
  3. Neurofeedback: January 2015 to February 2015
    I chose to go down this road because there were studies backing it up. Like progesterone, though, the studies were not yet conclusive. I found a local, certified neurofeedback practitioner and started going twice a week. I used the "DoD concussion" program and one for multitasking. After six weeks of it what I can say is that it did help, but only on the margins. It didn't cure me, but it helped with one skill in particular and that was driving. (The multi-tasking program helped with that.) I was able to drive during this period, but only for about 10 or 15 minutes at time. After that, I'd need a rest. And when I was driving, I couldn't listen to the radio or talk to anyone. But after the program, this changed. I tested my limits again and found that I could drive longer, listen to the radio while driving, and in general was better than before. But there was no additional progress after six weeks, so I stopped and moved on to what actually cured me. 
  
  
UPMC Pittsburgh Sports Medicine Clinic - **This Is What Finally Cured Me**: March 2015
This is the strange story of how Facebook, media coverage, the grapevine, and my wife's friend's brother, who I hardly know, saved me. What happened was, he had heard about my concussion through the grapevine, so when he came across an article about the Sports Medicine Clinic at UPMC Pittsburgh, he decided to go the extra mile and actually share it with me, even though we'd only met in person once - at his wedding. And how did he find me? Facebook. He messaged me a link to an article and I read it and was impressed. (Here is another.) Ultimately, his kind and thoughtful act helped me to finally get on the road to getting my life back!

But at this point in my recovery, I was fairly exhausted from trying so many things to get better and I was focused on the treadmill program, so I decided to give the treadmill program another month or so. And, well, to make a long story short, I was not better one month later, so I gave them a call. They were very busy at the time, so it actually took a few calls before I could get to the right person to get an appointment. And when I did talk to that person, the first available appointment was one month away. But of course, I took it. And here's what happened during my first visit:

  1. ImPact Assessment
    The first thing they did was have me take an ImPACT assessment test to see where I was. This is now a famous test that many athletes take as a matter of course to get a baseline for their mental skills. This way, after a hit, they can take the test again and see what kinds of brain injuries they may or may not have. And as a side note, this test was actually developed by UPMC.
         
  2. Meeting with Dr. Collins and His Associate
    Since they didn't have a baseline for me, after they reviewed my results, they asked how I did in school. And I said I did well. I had a 4.0 in upper division economics classes at UT Austin. They looked at each other, and then said something like, "Oh, then yeah, you have a pretty bad concussion." Apparently I had a pretty terrible score, which was so bad that they thought maybe I had a learning or mental disability...

    Dr. Collins is a neuropsychologist, but he takes a very broad approach and really focuses on the whole problem, which is to say the physical injuries and the psychological problems associated with PCS. And this is a big part of their success, along with the fact that everyone there only deals with concussion patients, all day, every day.
        
  3. General Advice I Got
    I had prepared a two page written summary of my symptoms and experience and gave it Dr. Collins. It explained everything in painful detail (I am a CEO, who likes "metrics"), including my current symptoms; tracking data on my daily, weekly, and monthly rest; my daily BPM rates for the treadmill program; how long I could work each day; etc.

    First, I was told I was way too focused on the problem and that I should immediately stop tracking everything. They felt this was bad for my mental health. I needed to just relax. Second, if there was something that made me feel uncomfortable, they wanted me to do more of that. The idea here is that by avoiding these things, I wasn't giving my brain any time to adjust to them. So if I was uncomfortable in chaotic settings (or whatever), I should seek them out and follow an "expose and recover" strategy, where you expose yourself to what bothers you, rest a little, and then expose yourself to the stimulus again. Over time, neuroplasticity would take care of the rest.
      
  4. Plan for the Day
    Next, Dr. Collins performed a few simple tests and asked a few more questions. Then, he told me about how the rest of my day would go, which followed their standard testing and treatment protocol. Essentially, I was going to go see a medical doctor, be evaluated by a physical therapist, and be evaluated by a vestibular therapist. After seeing all of these specialists, I would wind up with a custom treatment plan that Dr. Collins would go over with me at the end of the day. (Yes, it was pretty much an all day affair.)
      
  5. Medical Doctor
    I went to UPMC thinking that maybe I needed amantadine, but they disagreed because amantadine is more of a stimulant and they felt I just needed to relax. Their thinking was that I was suffering from some mild anxiety and they wanted to temporarily shut that off, so that I could recover faster. To accomplish this, they prescribed zoloft. I was against taking this, I guess just out of pride. But at that point, I was willing to try anything. I'll detail how this went later.
     
  6. Physical Therapist
    The next person I saw was a physical therapist. The goal here was to exert myself in different ways and see if I had any concussion symptoms. Having been on the treadmill so long, I assumed nothing would be found here. And of course, when they put me on the treadmill, I felt nothing. But there were a few exercises that surprisingly made me dizzy. Jumping up and down on a step made me dizzy. And when I did the same step exercises while going down and touching the floor to my left and right, I really got dizzy.

    After the session, my therapist created an exercise program for me that reminded me of cross fit training. Anything that made me dizzy was on the list and a few similar exercises were added as well. And I was told to get off the treadmill and go outside and run, where I would exposed to a lot more stimuli. And I was told to stop timing and tracking everything.

    Here is the training program that they designed for me. Of course, every injury is different, so these exercises might not be the best ones for you.
       
  7. Vesitbular Therapist
    The vestibular therapist had several of her own ways of making me dizzy, like having me stare at my thumb and then move my hand and head from side to side. I never got very dizzy, but it was there and noticeable in these certain strange circumstances. And as with everything else, the idea was to "expose and recover." So I was given a daily regiment of vestibular exercises.

    The vestibular therapist also found that I still had convergence insufficiency, so the Brock string exercise was added to my vestibular regiment. Here are some good YouTube videos with some of the same home vestibular exercises I did:

    Vestibular Therapy 1
    Vestibular Therapy 2
    Vestibular Therapy 3
    More YouTube Videos
     
  8. Recap
    At the end of the day, Dr. Collins met with me and went over my custom home therapy program and I was asked to come back in a month so they could re-evaluate me. His general idea for the cause of my symptoms was that I felt a little bit like I was falling all the time but that it was so subtle that I didn't really notice it. This was making me anxious and fatigued. Here is a summary of my program:

    A. Stop tracking everything (rest, sleep, BPM, etc.)
    B. Stop the treadmill program. Go outside and jog instead
    C. Take Zoloft
    D. Try to return to normal and expect to have a few "weeks of hell" with a lot of discomfort
    E. Follow the "expose and recover" process for anything that makes me tired
    F. Do the daily physical therapy exercises
    G. Do the daily vestibular therapy exercises
    H. Intensify the daily therapy as the exercises stop making me dizzy

    And please note, that this plan was customized for me with my particular symptoms and history, so it's important to be seen by Dr. Collins to get a program that will work for you. 


First Month on UPMC Protocol: March/April 2015
When I got back to my hotel after my first appointment, I did something I hadn't done in a long time. I turned on the TV. And I didn't time myself. I watched TV for about an hour, which I hadn't done in ages. I was tired and thought maybe I should rest, but I didn't. And in general, I started pushing the limits very hard. Now, I don't think this would have worked well until after I had been to Johns Hopkins and had my vision fixed and my constant headache cleared, but all of that was clear eight months prior. So if I had the right advice and guidance, I could have started down this path way sooner.

Here is the summary of what I did.
  1. I tried taking Zoloft. 50mg felt like way too much and the plan was for me to get to 150mg, if I remember correctly. In any case, I wound up being able to tolerate 50mg but I wasn't able to get past that. My UPMC doctor was very responsive over email, so all of this was taken care of remotely. Did this help me? I'm not sure. I was told that I wouldn't feel any of the affects of the Zoloft for two weeks, but even before then I was starting to feel much better. 
  2. I was religious about doing my daily physical, vision, and vestibular exercises. They made me dizzy and uncomfortable, but I followed orders and just did it. 
  3. I stopped the treadmill program and stopped tracking anything, like sleep, rest periods, etc. 
  4. I worked more off of my gut in terms of determining when to rest with the idea of getting out of my comfort zone. And as advertised, I felt terrible those first two or three weeks, but I also started to notice a change as it got harder and harder to make myself dizzy doing the physical and vestibular exercises.  
  5. By week three I saw major progress and by week four, I was starting to feel almost normal. When I first arrived at UPMC, I felt I was about 55 or 60% better. By the time I went back for my one month followup, I felt like I was about 90% better.
  
  
Follow Up Visit: April 2015
The follow up visit was smooth as silk. I scored much higher on the ImPact assessment, getting a score that seemed normal to them for someone with my background. My convergence insufficiency was just about gone and they could hardly make me dizzy at all (only one thing still made me dizzy and it was very mild). 

I asked if I could get off of the Zoloft, since I started feeling better before it even took effect and I was on such a low dosage. But they suggested I stay on it for the full six months, as planned, out of an abundance of caution, and I agreed. 

Dr. Collins said there was no reason to come back, unless I had a setback and wished me well. The whole team was just superb. And, of course, I can't thank them enough for the work they do and for helping me get my life back. Thank you UPMC Sports Medicine Concussion Program!    


Full Recovery: Late May / Early June 2015
By early May, I was feeling good enough to plan a family vacation for the end of May. Here I pushed myself to the limit. It was a trip to a Mexican beach with my wife and two small children, so I had to deal with a flight, customs, and car rental. Plus, there was a 2.5 hour drive after the flight and I drove the whole way. So, in short, after that I could tell I was better. I didn't have any symptoms and I was able to enjoy myself.   
  
  
Getting off of Zoloft: September 2015
I continued taking Zoloft for six months, just in case. Getting off of it was no problem. I emailed my doctor at UPMC and she suggested going to 25mg for a week and then going to one every other day and then to simply stop. This worked fine. I didn't notice anything when I came off of it.
   
     
Having my Life Back
It's great having my life back and I'd just like to once again thank everyone who helped me and my family get back on our feet. My hope is that sharing my experience will help others find the right kind of care and hopefully, accelerate their recoveries. 

If you have any questions, please feel free to post them on the Q&A page. I'll do my best to help.  

If you found the information on this site useful, please share it on Facebook or twitter to help others suffering from PCS find it as well. 

For more information, check out the quick tips. And best of luck on your road to recovery!  

175 comments :

  1. Hi,
    My name is Ashby Strauch, and I am a writer for an online health magazine. I was wondering if it would be possible to interview you for a story that I am working on about concussions?
    I found your blog very inspiring and insightful, so I would love to have some of your input in my story.
    You can contact me at ashbysstrauch@gmail.com

    ReplyDelete
  2. Hi Ashby. It was nice speaking with you on the phone. Thanks for helping get the word out!

    ReplyDelete
    Replies
    1. Hi Rico’s, is there any way I can I call you? I am gong through my symptoms really bad. And there is literally no help. I’m 25 and an electrical engineer. I do not want to lose my job and would like to get your insight. Antonio.ndoja93@gmail.com

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  3. Hi. I'm 4 months in my PCS. Your about 6 months of feeling better. May I ask, do you still feel normal/like yourself still? Has there been any relapse in any of your symptoms?

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  4. Hi Marty. I'm about 1 year into my recovery now. I've not really had any symptoms relapse. (Thankfully!)

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  5. Hello. This is an excellent blog with tons of resources. I am 9 months out and as a registered nurse, I found myself a little clueless about PCS. I am in the Baltimore area and Sinai Hospital also has an excellent Mild Traumatic Brain injury program. I also blog about my journey at https://brainydaysahead@blogspot.com
    You truly inspire me to keep going. Thank you so much.

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    Replies
    1. Hi Ella. Thank you for reaching out. I hope the information I shared is helpful. My thoughts and prayers are with you as you recover!

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  6. Hi, I stumbled across you page when looking for remedies for PCS.We live in Copenhagen and my daughter is 8 months sick from concussion after fall from the bike.She has bad headaches everyday just by sitting in a
    car,talking,listening.reading practically doing everything for more that 10 min at a time.Going to US to meet doctors is not possible in her condition so only email counseling/feedback is an option.We have run out of options as we have tried almost everything. Any information would be greatly appreciated.Thanks very much in advance (and taking the time to write your blog),and hope to hear from you.Thanks very much again....Teddy

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    Replies
    1. Hi Teddy, I am no doctor but that does sound like my early experience. The fatigue could be caused by vision problems, balance problems, and / or chronic pain. I had all of these problems at once so it was hard for a regular doctor or neurologist to diagnose me. Until I got to people with lots of experience treating concussions, no doctor could help all that much. I strongly encourage you to find a concussion clinic and go.

      Please go to martinrico.com and send me your email address using the contact page and we can talk more.

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    2. Hi Teddy,

      I would also say that if you can't get to a concussion clinic, try going to each specialist separately. A clinic is nice because you automatically see an eye doctor, neuropsychologist, vision therapist, physical therapist, vestibular therapist, and someone who could prescribe medications. Without a clinic, you'll have to go to your primary doctor and may need a referral from him or her to each specialist. This might be a slow and tedious way, but it's better than nothing. Some doctors will say, you'll heal naturally on your own over time. Yes, like in 3 years or something if you are lucky!

      Some of it is just about waiting like the bruising in your brain or the muscle injuries, but there are also specific treatable physical ailments. And those just need the right medical care.

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    3. Hej Teddy. Are you still active on this page? We live on Sjælland and have a similar story. Our daughter hit her head in June 2017 and is finally now getting some care. We found an osteopath who referred us to a neuro-optomitrist in Roskilde and my daughter now does sight rehabilitation every day.... We are struggling to get her back to school.

      Delete
  7. Hi, I was rear ended by a drunk driver and sustained a pretty nasty concussion and head wound I'm 2011. Since then I have gone through PCS and relapsed about 3-4 separate occasions over the last 4 years. This would primarily bring back the 24 hour headaches along with migraines.

    I'm currently suffering another set back fromantic over indulging at a music fest. So I expect my recovery to be another month or so.

    Please be careful moving forward not to trigger a relapse as its hell. You know this!

    Thanks for posting this because I need a reminder that it's possible to come back from PCS.

    Mark

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    Replies
    1. Follow up question, how exactly did you clear the 24 hour have?

      Thanks
      Mark

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    2. Hi Mark,

      Sorry to hear about your relapse. That's got to be frustrating.

      For me the headaches were mostly caused by occipital neuralgia. I got injections from a pain doctor and creams that really helped. Several months later and after my eyes got better too, the headaches cleared and so far I haven't had a relapse. Hopefully it will stay that way.

      Best of luck with your recovery!

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  8. Would you mind sharing symptoms,if any, that you still have?

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    Replies
    1. Hi Marty,

      The only symptom that remains is that I occasionally have a little claustrophobia that I never had before. But it is pretty mild.

      -Martin

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  9. I had a concussion in February and haven't been the same since. I just now came across your blog and it sounds so familiar. I've read others, but none of them mentioned the heart rate as a trigger. I thought I was crazy for thinking it was a trigger and that maybe I was just out of shape, which didn't make sense since I was extremely active before and somewhat after the confusion. I'm glad I'm not crazy for thinking that. Thank you so much for sharing your story, it really gives so much hope and sheds light on a tough subject. Thank you!

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  10. Beautifully written blog and extremely positive and helpful. I have had vestibular disorder for over 16 years with vertigo episodes (peripheral and central) sometimes for as long as 3 months. Had VRT, twice during one long episode. Then on August 22, of this year I had a concussion, severe impact on concrete. Fortunately, my history of vertigo and vestibular disorders is helping me...I got to neuro and eye doc and dentist and dermatologist first week. Now into week three, my hematoma on my head is still very large and not going down further, but docs are tracking. I have had a great otoneurologist for many years now and super neuro and VRT PT. With this concussion, thankfully, no full blown vertigo back. Have had a three year remission this time, but have pronounced vestibular symptoms with anxiety/panic/agoraphobia . I have been treated for bipolar disorder most of my life, don't drink any alcohol for 26 years now and don't smoke. Am 73 year old woman. I have been resting for two weeks, with someone who stayed first week 24/7 and now am doing what you started much later. While I rested cognitively when needed, I was able to watch tv for long periods do some reading and some computer time. I drove yesterday for first time alone, very short distance and got all the weak, shaky, anxious, vestibular symptoms. I believe part PCS and part my own mood disorder. But like you when you finally got to the treatment program that worked, I am pushing myself a little bit each day. I can't take SSRIs because of the bipolar disorder, but today am going out to drive again, two short trips, took .5 mg klonopin, to see if that helps me avoid the anxiety/vestibular issues. My goal now is to get my hair cut and colored next Friday, taking .5 mg klonopin, since I will be taking myself there and will have to get through the three hours and home.

    I am a retired SLP and educational administrator and in the past, have not let my physical and mental issues stop me but have listened to times when symptoms got severe and slowed down and did treatment.

    The VRT was super and I start again on September 14th since that is my worst neuro symptom now along with the mood issues. Thank goodness, my vision in right eye was saved, since that eye was pretty battered, swollen shut and that side of my face shredded off.

    Like you, I reach to get back to normal but with setbacks rest. Thank you so much for this wonderful supportive account of your injury and recovery.

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    Replies
    1. Hi,

      So sorry to hear about your injury and PCS. But it seems like you've dealt with similar symptoms before and have the right specialists to go to for help. That great! That's half the battle.

      I've spoken to a few others who didn't go to a concussion clinic, but were able to piece one together by finding all of the right specialists locally. The people who have found a good primary care doctor to act as "quarterback" have had good results. Here are what I think are the key areas:

      1. Primary care doctor for referrals and possibly anti-anxiety or other meds
      2. Pain Doctor for headaches / occipital neuralgia / etc.
      3. Ophthalmologist for eyes
      4. Vision therapist (often more important than the eye doctor)
      5. Vestibular therapist (very important!)
      6. Physical therapist who can prescribe exercises for vestibular issues.

      Let me know if you think I missed anything and best of luck with your recovery!

      -Martin


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  11. Hi Martin,
    As per the law of informed consent, I would add that "anti-anxiety or other drugs, are addictive, and known to be neurotoxic. They cause brain injury. They are not approved for use in this vulnerable population, they are contraindicated for use and brain injury protocol favors a "wait and see" how the person responds to trauma and injury prior to - if ever providing a toxic drug.

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    Replies
    1. Hi. Yes, you don't just go right to anti-anxiety meds. But eventually it does become an option for PCS patients, which is a different class of patients than those suffering from normal concussions that clear within a few weeks or months on their own. This is of course not my opinion but simply the way treatment was done at UPMC. Ultimately, this is a question for patients and their doctors.

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    2. Sadly owing to the nature of the injury, most BIS are not able to make those informed decisions themselves and doctors fail to give us real informed consent. With all due respect, regardless of how a medical facility fails to uphold the legal standards of practice and the law, repeating that to BIS is probably ill advised. I can give you some resources if you like, like Dr. Peter Breggins work with war vets with brain injury killing themselves on this neuro-toxic drugs. Benzo are especially debilitating and addictive even for people without brain injury and ALL psychotropic drugs have been know for over 40 years to CAUSE brain injury. Survivors have an ethical right to this, to protect their lives and their health. You post this information and set yourself up as an authority on the topic. This is a serious issue and honestly I think you should seriously think about what you are saying here because this costs people their lives. If you care about these victims and maybe your own legal interest, you might want to rethink the support of neuro-toxic brain damaging drugs as good advise to be giving this community. Sincerely, Thank you

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  12. Hi smartypants (username). I understand you have a strong opinion about antidepressants and I can certainly empathize with that. But I have to take issue with the idea that I claim to be an expert. What I really lacked while suffering from PCS was knowledge about what treatments were available and what treatments worked for others. That's why I wrote this article - so others would have at least one datapoint, which is my unique experience and I believe I have been very upfront about that and the fact that every concussion is different. And from the response I have gotten it seems that others suffering from PCS have gotten some value out of it and that warms my heart. Also, if you read my article closely I think it is clear that I said that I wasn't even sure the Zoloft helped me.

    I think to provide people suffering from PCS with a service in this regard the thing to do is to provide information about the possible side effects of antidepressants. The idea of using them as part of a treatment plan for PCS is out there and it is not my idea. Anyway, here is a link to the doctor you referenced. I am not sure what his full opinion on the topic is, but it does seem he participates in a lot of malpractice litigation around the topic.

    http://breggin.com/index.php?option=com_content&task=view&id=1&Itemid=41

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  13. Making too much out of this. I think your advice,Ricos, is great. I couldn't see a neurologist until 2 months in and that's only cause the office had a cancelation. From there I was referred to a neuropsychologist who I didn't see until 5 months in. Had to wait two weeks for the results at which point physical therapy, to include vestibular therapy, was recommended. As I'm doing all this waiting, on my own, I looked up vestibular and eye exercises and started doing them. I started walking and not just resting as what used to be the only protocol. The little bit I did at home got me warmed up for physical training. By the time I made it to vestibular/physical training.... my vestibular was soo much better we moved on to physical sooner then expected. I finally had hope. In the beginning of all this my doctors recommended xanax and fluoxetine as my anxiety was at a constant 10. I'm a military veteran and now a deputy sheriff. Needless to say in those two fields I've been in plenty of situations where fight or flight kicks in and never in my 42 years of life have I ever experienced anxiety to this degree and literally all the time. I could feel that "in a dream" feeling getting worse but I wouldn't take the pills. My suicide sorry was all to real and that's when I decided, if I am at the point of killing myself why not try these pills. I did, and I did it half ass. Basically taking half of the recommended dose out of fear of what they may do or not do to my brain. I did it for four months. PERSONALLY I emphasize PERSONALLY the small dose helped me get over a dark time in my life. One of the worse symptoms I have 9 months later, is the depersonalization "feeling like in a dream". Like nothing is real. I know life is real but that feeling of dream dose not allow me to feel my feelings when it comes to happiness,joy and love. Like being in limbo. I can't describe the nightmare to see my family and friends and not feel my full feelings for them. It's like talking to strangers everyday. At times I wonder if I would have taken these pills sooner would I feel this way now. Sure these pills can be dangerous but doses it matter how dangerous they are if you take life??? Again, to reach their own. When you read you take from it what you want. As damaged as our PCS brains are we still have choice. Depending how your brain was hurt, you don't know what treatments to do. To this very day doctors can't cure a concussion because the brain is so miraculously complicated. When I read someone's story, it's just that, their story. If I can get something out of it, then I do. I'm still recovering but I'm grateful I came across this persons individual story. It gave me directions on what to ask for. I'm hoping one day to fully recover. Actually, I wouldn't mind living with the pains, I just want this dream feeling to go away so I can talk to my son and actually feel the love I have for him. As for this reader, thanks.

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    Replies
    1. Marty, thanks for sharing some of your powerful story with us. Hearing each other's stories, I think, makes us all stronger.

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  14. I am about 2 months into what my primary care doctor thinks is PCS. I am on medicaid, ironically because I am 2nd year medical student who joined the army. I figured I would opt out of my school's health insurance until my military benefits kicked it. Terrible mistake and hindsight is 20/20. Here I am about 3 months after my commission as an officer in the US army and I am still waiting. Not only that, but I grossly overestimated military health insurance and what it covers. I am not sure that even when I get my insurance if I will receive quality care.

    Needless to say, finding the care I need with medicaid is damn near impossible. I saw PM&R who has experience with concussions, but he doesn't necessarily specialize in it, there was no team (i.e. neuropsych etc). He prescribed me Amantadine and basically told me to ride it out for another two to three months and if it is still bad after three months to come back. I didn't take the Amantadine because like you I am anxious all the time and having panic attacks, and with my minimal medical knowledge, I was worried it would wind me up even further. Your care seems much more comprehensive. There is a supposedly amazing group near me, Rothman, with world renowned concussion specialists, but they don't take medicaid and I unfortunately can't afford their out of pocket costs (still waiting on my money for commissioning as well). The level of depression and anxiety I feel on a daily basis is frankly terrifying. Medical school is already one of the most difficult endeavors one can undertake mentally, but the past two months have been excruciatingly difficult. If I am lucky enough to fall asleep, I pray every day that when I wake up these symptoms will all have abated. Some days I will feel fine, and then I break down for another week, or so.

    It really stinks because I am an upstanding citizen and now soldier, trying to dedicate my life to medicine, but I can't even get my own proper medical care. I feel like I am truly left out to dry. If I take a leave of absence from school, I will likely have to repeat my 2nd year, which is one of the most notoriously difficult years in medical school. I don't know what to do at this point.

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  15. Hey Karl. Really sorry to hear about your PCS and the situation you're in with medicaid makes it really tough. If there's anything you can do to get into Rothman, I'd do it. In my case, I just wasn't naturally healing. I needed medical help to even start the healing process, so I'm worried that without getting to the right people you're be stuck like I was. A good neuropsychologist, and a vestibular, vision, and physical therapist might be in order. That's what you usually see at a concussion clinic. They can give you a home program though, that won't cost anything beyond the first visit. That's what I did.

    If you want, you can email me here and we can talk more:
    https://mrico222.wufoo.com/forms/zsvh8ui0ae2i0c/

    -Martin

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  16. This comment has been removed by a blog administrator.

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  17. Hey,

    Just would like to say this is probably the most comprehensive and helpful piece I've seen on the web regarding PCS.

    I had my concussion way back in August 2015, did no treatment / therapy on it for a year (it healed dramatically though). A year after I'd say I'm around 65-70% fine, the specialists I saw in the UK pretty much recommended the exact same things to me but I was a bit skeptical.

    Now I've read this blog, I'm 100% dedicated to getting back on track.

    Thanks !

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    Replies
    1. Hey Mike. Glad to hear you're about 70% better even without any treatment and best of luck with getting back to 100%. There's nothing like finally seeing this problem in the rear view mirror. And thanks for the compliment! They're always welcome. ;-)

      Delete
  18. Hey,

    Not sure this if comment went through so I'll post again.

    Did you ever go through mini setbacks AFTER you started doing the final routine when your symptoms came back stronger?

    For example, let's say first week doing your exercises then you wake up one morning and feel very rough with all symptoms back but then it gradually goes away again.

    Did you ever get these mini setbacks?

    ReplyDelete
  19. Hi Mike, with the Buffalo protocol, yes I had many mini-set-backs which is a good point. If I drove myself too hard, I could start feeling bad and have to back off. Since I wasn't really being directly guided by a doctor for this, I am not totally sure what I was doing wrong. I did have mini-set backs but I kept going and did get to 90% of my max BPM. But even then I wasn't cured. In retrospect, I think I should have gone to Buffalo or found someone trained in it who could guide me. This is why I can't really say if it is a possible cure. For me, it helped a lot, but did not get me to 100%. The opinion of one person at UPMC was that just doing a treadmill was too one-dimensional. Eventually, jogging or running or a high heart rate no longer gives you symptoms (which is a good thing), but what about all the other things that give you symptoms? So to me, the Buffalo protocol amounts to an expose and recover system for a high heart rate that sets off PCS symptoms.

    Anyway, hope this helps!

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    Replies
    1. Thanks,

      and any setbacks with the vestibular and gym routines at all?

      Delete
    2. For that I really didn't have any set backs like with the Buffalo protocol. But once I started the vestibular and gym routines / physical therapy, I really tried to go back to normal and that did make me feel exhausted. But it was different. It wasn't severe fatigue where I had to just rest for days. I was just tired because I was exposing myself to everything that still gave me symptoms and by hat time I had gone through the Buffalo protocol so a high blood pressure no longer gave me any symptoms.

      Delete
  20. Here is an email conversation that I thought might help everyone. My responses have ** in front.

    ********************************************
    Hi Martin,

    I read your post-concussion blog. Thank you so much for writing it. Apologies ahead of time for my long message!

    I am about 4-5 months with PCS and I read your blog which had some great advice. I went to a local concussion clinic which is supposed to be one of the best in the area. However, I have not received the kind of thorough workup you described at UPMC. The clinic has all the therapists you mentioned, but the treatment is directed by whoever happens to be your primary practitioner there. In my case this was a nurse practitioner (who trains under a very highly regarded concussion specialist). She spends about 30 seconds testing my balance with my eyes closed (which is usually fine). Then she has me follow her fingers side to side and up and down and just asks if anything makes me dizzy. I usually say "no" because nothing obvious jumps out to me, like the room is spinning. But I do notice something is slightly off with my vision tracking motion and occasionally very slight dizziness. Since nothing obvious jumps out from this very short exam, she doesn't think I need to be seen by the vision or vestibular therapists.

    **So this sounds familiar. The first people who really took a look at my PCS symptoms were at Hopkins. It’s not a proper concussion clinic where that is what they do day in and day out, so they missed some things. Vestibular was a big miss. First, if you can go to UPMC. Otherwise there is a website where you can look for a good vestibular therapist, but I can’t find it. I just emailed someone I know at UPMC and hopefully she will respond soon. (The response was APTA.org) When I was tested at Hopkins, they never made me dizzy and also it happened to be a good day for me. UPMC pushed me hard. I was in the gym for 45 minutes. They put me on the treadmill first and got my heart rate up (for me a lot of the problems were much worse when I had a higher BPM). Then they put through the rounds and I only reported some minor dizziness. Then I went to the actual vestibular people and they found a lot of little problems. It was all fixed with the right therapy which I did twice a day.

    **Also, it sounds like you need vision therapy. This is tricky because it is often excluded from health insurance. But you can usually go and then do home exercises. Dr. Singman suggested this person locally for my kids. I think the key was that this doctor “completed a clinical residency in Vision Therapy Rehabilitation and Pediatric Optometry” So you might need to find someone with a similar profile locally minus the pediatric part.
    http://ocvt.info/briana-larson/

    **I also got computer glasses. I mention this since you say are in tech. I am too. The computer glasses were meant to make it easier on my eyes to use the computer. I never needed glasses when working on a computer before, but they helped a lot. They’re essentially a vision prescription for an arm’s length away from your eyes. I still use them because they make it easy for me to keep good posture working on a computer and not lean my head forward, which is bad for your neck and back.

    I am however seeing an SLP therapist at the clinic for cognitive rehab. She is essentially giving me guidance on when and how to take breaks and rest as I try to return and get through my work day. She is also helping to guide my return-to-work plan, gauging how well my cognitive deficits are resolving over time.

    **I had a neuro-psychologist who coached me on this kind of stuff. She kept saying I should be fine in 2 weeks or 4 weeks. (She was off by about one year) It was somewhat helpful, but didn’t address any of the root physical causes. I don’t put too much faith in anything that doesn’t go after the root physiological problems. It’s not all in your head and it won’t always heal on its own, or not anywhere near fast enough anyway.

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      __________

      My primary physical symptoms are those cognitive-fatigue headaches which happen almost daily, and closely related to these is the cognitive slowness. I simply don't feel like I can think as fast or efficiently as before, and if I try to concentrate hard or force it, I get those headaches now.

      **Yes, I was mentally slow or foggy. I didn’t get a headache from that, I just got tired. I was told this was because my brain was doing so much to compensate for things that weren’t working right. For me the fog cleared when I got the vestibular taken care of and did the expose and recover (more on this below).


      I also developed anxiety and depression. The clinic said this can be part of the concussion, but that they didn't treat this part, she just referred me to a psychiatrist who gave me anti-depressant and anti-anxiety meds. The meds haven't helped my mood very much because every day I still experience the aforementioned physical symptoms which is the primary cause for my anxiety. Unfortunately, they seem to believe it's the other way around... My anxiety and stress is the cause of my physical symptoms. There may be something to this but I think it's more that one kind-of fuels the other in a cyclical nature.

      **For me, I was told that my vestibular problems were causing my fatigue and my anxiety because my brain always felts like I was falling a little bit. That’ll make you anxious and after a while that exhausts you. They put me on Zoloft to help me calm down, but my understanding was this was treating the symptom but not the root cause.


      My primary disappointment has been that I don't feel like I've ever been given a concrete plan like you got from UPMC. This is a reputable clinic but they have essentially just told me I'm doing well and I just need to wait for my brain to heal and "there is no timetable". I was never given any at home exercises. I was never told to work on "expose and recover". I was never given any impression I could help myself in recovering from this besides waiting and waiting. It's almost like once they found out about anxiety symptoms, they are quick to writing off a lot if not all of my complaints to that, or rather that I have a lower tolerance for stress.
      “There is no timetable” is itself depressing. UPMC is unique in the “expose and recover” idea I think. One guy there told me it was their secret sauce.


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      __________
      So, I had a couple questions for you:
      1. I know you said your headaches were more related to your eyes. But did you ever experience these cognitive fatigue headaches and the general feeling of slowness? I mainly feel like I can't keep up with the pace of conversation, especially in group settings. And this almost always triggers these headaches. It can also happen just being in high stimulus environments like big box stores or airports. It's like my brain can't quite keep up like before, I get overwhelmed and stressed and this usually leads to the headache.

      **This sounds a lot like my experience. People or music or background noise, or any number of things could just make me super tired. And being slow was the first sign that I needed to take a break. If for social of business reasons I just pushed through, by the end of it I was spent and had to rest for hours or even days at the beginning. One of the interesting things I read was the idea that concussion recovery for some people was a lot like recovering from a stroke. Your brain needs to re-wire itself. (Plus you might have multiple problems all happening at once.) So what they told me to do was find the things that cause my symptoms to get worse and expose myself to that and then rest. If it’s going to a mall (crowded, loud places) then go there and walk around and when you feel tired go back to your car and rest, then go right back out and expose yourself again. The idea is that the brain needs to be exposed to the stimulus so that it can reacclimate itself to it – rewire itself to deal with the situation. If you avoid it all, it will never have enough time to re-wire itself and you’ll be stuck. They said as I was doing this I should expect to have a few weeks of hell and I did. But it worked. I also went back to the intersection where the accident happened. I drove through it even though I had been avoiding it. Eventually I was used to it again.


      2. What do you think I should do at this point regarding the concussion clinic I'm going to? I don't know why I've never gotten the thorough workup you described at UPMC. Do you think I should speak up about this at my next appointment?

      **This is of course your call, but I found that getting second opinions often paid off. I’d look for a good vision and vestibular therapist if you can’t go to UPMC. What to look for in a vision therapist is noted above and I will update you as soon as I hear back from the vestibular people. And the best is to find people who do concussion work all day, every day. The UPMC program is part of a sports medicine program.


      3. I took a look at the exercises you were given to do. It seems like a lot of them are really focused on getting your head to move around a lot in all sorts of directions. Lots of up and down and side to side movements. Was that the general idea to get your head moving around a lot in space? I can see why your running training wasn't really moving your head around besides possibly a little bouncing motion.

      **Yes, it was to get my head moving in the exact weird ways that they found that made me a little dizzy. There were motions that I’d rarely do or it seemed that way to me. The trick is knowing how to look for the dizziness. And I think on a scale of 1-10, I only reported maybe 2’s or 3’s. I really didn’t think dizziness was in issue for me.

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      __________
      4. Did you do your PT exercises every day or just 5 days / week as shown in your plan? What about the vestibular exercises? Did you also go running outside every day in addition to these workouts?

      **I think I did the exericses 5-6 times a week, once a day. The straight vestibular exercises I did twice a day and maybe 6 days a week or every day. I don’t exactly remember.

      5. How did you go about implementing "expose and recover"? Did you actually plan exercises to visit big box stores or malls and just stand there or did you just start allowing yourself to go into more scenarios that might provoke symptoms?

      **Explained above.

      6. It sounds like you had anxiety issues as well. Were you ever told to seek counseling, try relaxation exercises, or practice daily meditation? For me they are heavily focusing on this stuff but I think while I still have physical symptoms this is very difficult to treat.

      ** I was referred to a neuro-psychologist, which was just talk therapy and going over the rest period idea. I went to maybe three sessions total. If I had kept going, they might have eventually gotten to relaxation exercises, but we never got to that. In retrospect for me, it was all about finding a set of medical doctors who could each diagnose and treat what wound up being about five concurrent physiological problems that resulted from the car accident I was in. Along the way, I had to reject the advice of some of the doctors and keep looking until I found the right ones with reasonable answers that actually worked.

      Hope this all helps!
      Martin

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  21. Thank you so much for sharing your experience! My symptoms seem so similar to yours. My vision problems are very bad when driving now which is not good. It been 3 months since my car accident and things are still about the same and in some cases worse. I couldn't get to the phone fast enough after reading your experience. I am scheduled to see Dr. Collins at UPMC and his team in 3 weeks! Hopeful for some answers and a solid path to recovery. I'm fortunate to live just 3 hours away. It's amazing what a simple jolt to the head can do to your life. I'll keep everyone posted here with updates. Thanks again. Chad

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    1. Hey Chad. Looking forward to hearing more about your experience at UPMC. Mine was amazing but that is just one data point.

      Best of luck!

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    2. Martin, I'm also scheduled to see a neuro optometrist and a neuro ophthalmologist. My family doctor referred me to those but I can't get in until after my UPMC appointment. I think my vision is pretty affected because so many of my symptoms are triggered by using my eyes in various ways. I'm an avid long distance runner so in hoping can get clearance to get back to running after my UPMC visit. Chad

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  23. Hello,

    I have fell on a trmapoline while doing a summersault and I heard my neck crack as I landed on my right side of my neck and upper back. My head sprung forward but I hadnt felt anything but soreness. Two weeks late I still wasnt feeling well and decided to go to the emergency. The docs told me that I may be suffering from PCS due to my mild headaches. I wanted to get a second opinion and decided to see my family doctor. My family doctor told me it was a strain and that my symptoms are due to my worry and stress since I didnt hit my head on the edge of the trampoline, but on the trampoline itself. Regardless, I am scheduled to see a specialist at a sports clinic. Ever since my emergency visit, i have been constantly light sensitive, very anxious, and I dont feel connected to my surrounding like I used to. It has been almost 3 weeks after my trampoline incident and I only started to get these accumulating symptoms after having read about PCS. I am paranoid that I will never get my normal life back. I am still working, applying to business school, and trying to stay involved in my community. But at the moment all that is preoccupying my mind is whether I will ever recover. Any tips? Thank you so much, your post is the most positive I came accross.

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    1. Hi. Everyone's experience is different so it's hard to recommend any specific tips except to try to return to normal and if you can't go to a concussion clinic or sports medicine facility, which is what you are already doing. The light sensitivity is a classic symptom and I had it too. By going to a concussion clinic you'll be avoiding the doctors who might not know what it is or think it's "all in your mind." Best of luck and stay strong!

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  24. I'm one year in..... worse thing I did was to obsess over PCS, getting back to normal, when will it happen and about a million other questions. Feeling disconnected can be a symptom. It is for me but its gotten way better. My advice,don't obsess on symptoms. Stay off the Internet about anything pcs. It'll lead to rumination, anxiety and depression. Cope with your symptoms. Don't search the Web and see if you have that symptom that you came across. Stay active yet rest more then you usually do. Expose yourself to your normal life as best as you can and rest when it's too much. Some kind of physical therapy if your not improving. I'm not a doctor so please consult one before doing any of this.

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    1. Thank you so much for your comments!

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    2. Hey Marty, I agree. On the one hand, I found some specific ideas online that lead to good doctors and treatments that over time cured me. On the other hand, 90% of the time I was just reading stuff that lead to more anxiety, which made things worse. Anyway, well put!

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  25. Hey Marty,

    Reading your blog has just been like hitting the jackpot for me. I hit my head about 5 months ago, unfortunately it was on a night out and I was alone so the story has largely been patched together and at first I had been very busy that I hadnt linked my symptons to that night. The day after I could mot walk without getting very dizzy and needing to sit down. Over the coming few weeks, I started having many vision problems, ringing in my ears, headaches and always very tired. As I hadn't linked the symptons, completely out of character, I became anxious and depressed that nothing was improving. Paying for a detailed eyr exam, they admitted my prescription had changed and gave me a stronger prescription, which you say is a bad idea? The headaches wased but still come back when I try and concentrate on work. My concentration and memory levels have also been noticeably very poor since the incident. Only recently have I been able to resume running which I love and I am so pleased to read that this is actually a good thing! I'm so ready to get rid of these symptons now though as im generally very fed up, is it just a case of time?

    Thanks yoi for your blog!

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    1. Hi. I'm Martin, the author (ricos userID). Marty4292 isn't me, it's someone who's posted a lot of great comments and has a great name! ;-)

      Anyway, every concussion is different so I'm afraid I don't know if it is just a matter of time. I think that does work for a lot of people, but others need specific medical treatments like the ones I detailed above. As for the vision prescription, I was given a stronger prescription too but that turned out to be the wrong way to go. My doctor at Hopkins reduced my prescription and told me to just deal with things being a little blurry while my eyes and nerves healed. Within three weeks, and I'm not a doctor so I don't know how this worked, I no longer needed to wear sunglasses all the time. Although at the same time I was getting treatment for occipital neuralgia too. In any case, without just repeating what I wrote in the blog, I'd say give it time and if that doesn't work, get to a concussion clinic where you can be seen by different specialists. For me and possibly the issue was I had multiple physiological problems at the same time in addition to my brain being hurt and needing time to heal. So I needed a bunch of different specialists and preferably ones who knew how to deal with concussions and who would talk to each other.

      Glad you enjoyed the blog! :-)

      Take care
      Martin

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  27. Mendy,

    So sorry about your accident but glad to hear you're making progress. We all tend to think those with anxiety are "weak" or something, but once you experience it you see it's a physical reaction. And I too obsessed about my symptoms, which is why they wanted me on zoloft. Marty4292 made a good post above about just not obsessing and it's great advice.

    Love your positive attitude! That makes all the difference.

    Take care,
    Martin :-)

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  28. Hi Everyone. I've been asked several times if I still have any symptoms and I've said no but that I am at a new normal with a little claustrophobia I didn't used to have. Well yesterday I actually did have a temporary return of symptoms. I was watching a taping of the Late Show and it was super loud and that set me off. Loud noise and crowded places was a problem for me at the beginning but it seemed to go away. But I guess I hadn't actually been exposed to this much crowd and noise since the accident. Anyway, I held tight and kept it together and after about 25 minutes it passed. So it looks like I still need to expose myself to some concerts or something to fully get past this and I guess it shows that these symptoms can linger for a while without treatment.

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  29. Sorry for your set back. At least you can recognize it and you have the knowledge to get past it. Although I do have a question of you don't mind answering. Can you put into words what your new normal is as opposed to your pre-injury normal. I don't want to assume if the changes are many of few but I have been hearing that a lot lately from other concussion recovering people

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    1. Hi Marty 4292,

      My new normal is just as I was before, except:
      1. I wear progressive glasses now
      2. I wear computer glasses when working on a desktop or laptop (before I didn't need glasses at an arm's length from my eyes)
      3. I have some claustrophobia that I've not addressed, mostly in an MRI machine and sometimes on a plane or when I am confined. I can push through and be fine, but there is anxiety now that I never had before.
      4. This new thing I discovered is loud noise can cause anxiety, which never was the case before. I don't tend to go to loud live music events though, so it's not a huge deal.

      I would guess that since I don't have any underlying physiological problems anymore that expose and recover would work for taking care of these problems, but I'm not 100% sure. I deal with it by simply living a normal life and being uncomfortable sometimes on a plane or at an event where I am seated and can't easily get out. (I was confined in the car for a while after my accident and I would guess this is where this issue comes from.) At the taping of the Late Show you could not get out of your seat without stopping the show. That put me on edge. But then the insanely loud music really hit me. After about 30 minutes of discomfort, I was fine (the loud music stopped and the show started).

      Anyway, I think that's all, except that now I only drive Volvos, but I don't think that's a medical condition. ;-)

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  30. Thanks for sharing that. Personally, anxiety and a slight disconnected feeling that just won't leave have been the most bothersome lingering symptoms for me. They have gotten way better, 13 months since my PCS but still there a bit. I've come a long way in a year and can only assume I'll be better then I am now in another year, hopefully less. I truly beleive I'll get my normal back and again thank you for your post. It helped me a lot when I felt hopeless.

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    1. Very glad to hear you're getting better and I know just what you mean about the hopelessness. I was there on and off through the whole ordeal. Keeping faith and the right treatments are the keys. Take care Marty!

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    2. Hi Marty!

      The disconnected feeling follows me on a daily basis 2 months in and I must admit, it is the most anxiety-provoking symptom. I would like to believe it is due to my photosensitivity as well. My concussion specialist told me that it is due to the symptoms. Once we fully recover, that feeling will be gone as well. Prayer for a fast recovery!

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    3. One thing I have noticed is that when I try to ignore my symptoms I feel happier and "less" disconnected. Anxiety worsens that symptom. Also, my biggest advice is not to read anymore about PCS. It caused me enormous stress as a science major and working in the field. Most of the posts on the internet are negative and hopeless. A positive outlook and an appreciation of day to day moments will speed our recovery in my opinion! Rumination and overthinking only make thing worse, and I learned the hard way. Now im just trusting the process, knowing that it is only a matter of time and we will be back to normal and looking back at all of this! Stay strong :)

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  31. Thanks for sharing that. Personally, anxiety and a slight disconnected feeling that just won't leave have been the most bothersome lingering symptoms for me. They have gotten way better, 13 months since my PCS but still there a bit. I've come a long way in a year and can only assume I'll be better then I am now in another year, hopefully less. I truly beleive I'll get my normal back and again thank you for your post. It helped me a lot when I felt hopeless.

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    1. Marty4292,
      I have that same disconnect feeling (and wow is it a pain). I'm sorry if I missed it, but had you ever had the disconnect feeling before pcs?

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  32. Hey Ricos! Im beyond impressed that you cracked the code of PCS when so many haven't... Since my accident in Jan/2017 i still have a headache and sometimes feel like the pain is behind the right eye brow/socket. At first it seems like i lost strength in my right side (arms, legs etc) but seems to be getting stronger (sound familiar?) I didn't blackout, didn't feel anything until 2 days later. The only thing I've done medically was get an MRI. The radiologist said there was no signs of bleeding or fractures or anything.

    My questions are, did you really need to see that eye doctor in Maryland in hindsight? Because all you really needed was that magical cream? Or are the eyeglasses necessary to heal the headache? (I've lost my "close up" vision and wonder if that contributes to headaches) or in hindsight, do you think the UPMC would have taken care of everything that Maryland did making Maryland a waste of time in general?

    My last question is do you know of a place in Southern California that compares to the UPMC? Ive googled, but i just don't trust what i see and i don't know where to go when as you know, most of these "medical professionals" are so out of date on concussions..

    Thank you for being such an inspiration to me and many others!

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  33. Hi Lee,

    Very sorry to hear about your concussion. Let me see if I can answer your questions.

    1. I think I did need to see Dr. Singman, because he knows all about concussions and tested me for a lot of different things, like occipital neuralgia and convergence insufficiency. The weakened prescription did help, especially since I was walking around with sunglasses all the time. It helped with that right away.

    2. The cream was for occipital neuralgia and worked in concert with the injections I got from a pain doctor. I think I needed both.

    3. Losing your close up vision to me means you might have convergence insufficiency, meaning you can't focus to close up objects because you can't cross your eyes. This could lead to headache and fatigue and difficulty with computer screens. The right vision therapist should be able to help you with that. I just did the Brock string twice a day for a month or so and it fixed it by retraining my brain and strengthening those muscles.

    4. The headache behind the eye is exactly what I had and it was occipital neuralgia. For me the pain started above my ear and went in a line towards my eye, but my eye was the focus of the pain.

    5. As for UPMC, that's a good question. I showed up with my vision problems already healed, so I can't really comment on their ability to fix those problems. You might ask them before going.

    As for Southern California, I'm afraid I don't know... Wish I could be of more help there.

    Anyway, thanks for reading the blog! I hope it was helpful.

    Take care,
    Martin

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  34. Thank you for being brave enough to share your story. I am so grateful that you meticulously recounted all the different treatments (and attempts) for your injury. I was losing hope with this last concussion (yup, concussion magnet here!). Post concussion syndrome just seemed like another way of saying "you're messed up but we dont know exactly what is wrong".

    I feel a renewed sense of purpose now that I am focusing on rehabbing my injury versus just staying away from stimuli. Focusing on vestibular or vision deficits feels much different than just having a vague constellation of symptoms. I have already noticed improvements in my symptoms in 2 weeks, despite being 11 months in when I started my self rehab program!! Hopefully, it continues to resolve because I am ready to get back to living!

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    1. Layla,

      Sorry to hear about your multiple concussions, but very glad that the article has been helpful. I hope things are still going well for you. :-) It's a long road and keeping hope alive is half the battle.

      Take care
      Martin

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    2. Thank you for your kind words! Slowly getting better but hoping to speed things up with some professional help. I was wondering what you did for vision therapy other than brock string? Was it all to treat your convergence insufficiency or did you do saccades for instance?

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    3. Hi Layla. For what I had, the brock string was all I needed and it was for very bad convergence insufficiency. My vestibular therapist put me on it and it was all home exercises. My kids were in the same accident and had to go through much more extensive vision therapy.

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    4. Thank you for the response. I am still struggling with figuring out how much to push. Likely did waaaay too much during my initial couple of months. Now that I am getting treatment and trying to retrain my system, I dont know where that limit lies? Is it a 5/10 or less?

      The psychological aspect of all these injuries has been so bizarre. Its just frustrating to go from a fairly outgoing and adventure seeking person...to this! Just feel anxious all the time. Yikes! This is why I appreciate the candid tone of your writing!

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    5. Hi Layla

      It's hard for me to say how hard to push. All I can really do is share my experience. (No medical degree and alll ;-). But I can say that the recover part of expose and recover is important. You should expose then wait until you feel new-normal again, if that makes sense, before going for more exposure. And there are a lot of dimensions. For example, I spent more time than I needed to on the buffalo protocol. I was just exposing myself to high BPM again and again, and expecting to fully recover. But there were dimensions to my injury I was ignoring at the time, like vision and vestibular. This is why getting into a concussion clinic can prove so helpful - a good one will look at all the dimensions.

      As for the anxiety, yeah it's like you are a different person all of the sudden. I tried to think I could tough through all of that. Ultimately I had to do exposure therapy relating to the location of the accident, which I had been avoiding. Also, when I was seen at UPMC, they put me on Zoloft as you know to calm down the fires of my anxiety. And to be honest, it's not all gone. I still have the occasional weird reaction.

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  36. Thank you for providing such a comprehensive account of your journey to health. My son is still suffering from brain fog especially after exercising. He tends to have setbacks more frequently than expected as well. His p.c.s. is the result of numerous concussions snowboarding. His last significant hit was three years ago. After reading your article, I believe we should have from the start gone to a well established concussion clinic. I was hoping you could advise me.
    I read that you went to the UPMC Sports Medicine Concussion Program. Two others that were recommended were the Cerebrum Health Center in Dallas and The NeuroLife Institute in Atlanta. Are you familiar with the other institutions and did you choose UPMC Sports Concussion Program over those? Do you believe the exertion program offered at UPMC was comprehensive?
    Thanks again for your help!!!
    Paula

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  37. Hi Paula. I only have experience with UPMC and Johns Hopkins, so I can't help you decide on UPMC vs. Dallas or Atlanta.

    I found my way to UPMC after I'd already solved some of my problems, like headaches, vision issues, and having a high BPM (heart rate) cause PCS symptoms. So all I can say is that it was comprehensive enough for what I needed. They did an excellent job and do it every day, so I highly recommend them.

    And for brain fog after exercising, I would look into the buffalo protocol.

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  38. Dear Rico
    We made an appointment to see doctor Collins but in the meantime we went to see doctor Womble in Virginia she has worked with doctor Collins and her team are wonderful.
    My daughter suffered a concussion for almost a year and with the exercises and the vestibular theraphy she is almost cure.
    I really encourage all of you guys to do the expose and restore and most important follow the vestibular theraphy. Doctor Womble and her team work at Innova concussion clinic and they follow the same protocol as doctor Collins.
    I cant thank you enough for putting this blog and educate people with pcs we really appreciatte and wish all of you people can recover fast

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    1. Very glad to hear about this Monica! And thank you for sharing the details about Dr. Womble.

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  39. Hi. Thank you for posting about PCS. It is amazing to me that so many doctors are still so clueless on how to help people suffering from this. My first concussion was from a car wreck in late 2010. I had never had one before and was surprised at how much I was affected...vision disturbed & spasms, balance issues, head and neck pain, fatigue, and foggy thinking...this went on for about 6 months eventually making a full recovery. Then in 1014 I fell backwards off of a 6 ft ladder in my garage into my concrete driveway. I lost consciousness for a few seconds and didn't realize I had hit my head because I had sprained my ankle and it was swollen and throbbing. I went to bed early to awake the next day with a horrible headache and I knew...another concussion. I was kept out of work a few days and then recovered pretty quickly a few weeks. I think this was because I was in good physical shape and I worked out all the time. I took two weeks off and got right back into it. Then later that same year in August I was t-boned by a car and that was my last concussion. I have not recovered completely like I did the other times and 2years and 8 months later, I am not sure I will ever get back to myself. On the outside I seem ok to people because I walk , talk, work, etc... but everyday I am reminded of how I am not the same person I used to be. I have two degrees and a masters in education, yet I can not multitask ( driving and talking on the phone will put me in some unknown location and I won't even realize it) I become emotional or so angry that it scares me bc at times I fear I may do something on impulse that ovcantvtake back, I struggle to remember things...sometimes small sometimes big, but still surprising each time I can't count on myself to remember regular things. It's like I start with a clean memory slate several times a day. I forget some things a few minutes after I hear them and remember others. The bad thing is I don't get to chose which ones. ;) big ones like appt., bills, meetings, birthdays, names of people I see everyday or just standing there not remembering why I was about to do because I got distracted by something else...a sound, a thought, something on the countertop.. I also have a clumsy, uncoordinated issue with my hands. I spill things, drop things, and fumble when trying to grab something like a glass. I am an artist (hobby) and previously had great hand control and hand:eye coordination. I have a hard time reading and comprehending silently I think it's due mostly to attention. A lot of your symptoms really struck a chord with me, especially vision. Initially, this was unbeatable. I had light sensitivity but also couldn't look at any type of vertical or horizontal lines and I never realized how many times I had to pass them-my staircase, my window blinds, the stripes on Ava friends shirt, the tile patterned floor, it was awful! That part is much better thank God, but I still struggle with the rest of it. ..it's exhausting and I have really grown tired of explaining this to neurologist that day I should be better by now. I have had two Neurophychological tests, both showing mild cognitive impairement due to the injury. I can tell that I have gotten much better, but many issues still linger but I am hopeful that one day they will go away for good and I'll be myself again. My doctor has suggested that I go to a PCS specialist like Hopkins or Mayo but they don't take my insurance-HMO BCBS. I live in Atlanta, GA. Do you know any other post concussion specialists?

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    1. Could you describe the spasms that you had? Thanks!

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  40. Hi. Really sorry to hear about your multiple concussions. I know that UPMC helps people with multiple concussions, but I don't about what's available in Atlanta. I'd look for a sports concussion clinic where you will be seen by a variety of specialists (neuro-psychologist, medical doctor, and vision, physical, and vestibular therapist. I was in a car accident, but found the best treatment at a sports concussion clinic.

    You could have lots of issues happening simultaneously so one doctor looking at it from one perspective might not be enough.

    My experience is that if a doctor just tells you to rest and wait, that's not going to help much. Find the doctor who realizes this is a multidimensional injury and who relies on a team of specialists to identify and treat the underlying physiological causes, then you've found the right one.

    From a google search there seem to be a lot of options in Atlanta.

    This one looked interesting because they mention vestibular and other issues.
    https://www.shepherd.org/patient-programs/brain-injury/complexconcussionclinic

    Other options:
    https://www.google.com/webhp?sourceid=chrome-instant&rlz=1C1CHBF_enUS728US728&ion=1&espv=2&ie=UTF-8#q=atlanta+sports+concussion+clinic&*

    I hope you're able to find a good place in Atlanta on the Blue Cross plan. If that fails, you can ask your primary to fill out the paperwork asking for an exception so you can go to UPMC. That's a tough road in itself, but it could be an option.

    -Martin

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  41. Thank you so much for your guidance on where to go. I actually went to the Shephard Center Outpatient facility and was then referred to the main facility. Unfortunately, it didn't work out. By there own admission, they are used to helping patients with more severe TBI's. I will definitely check into the other place you mentioned. Emory has a Neuro sports clinic, but also a very long waiting list. What does UPMC stand for?
    Thank you again for your suggestions. It helps to know that we are not alone on this frustrating and complex journey.

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    1. Happy to help. I know what a terrible situation it can be.

      UPMC is for University of Pennsylvania Medical Center sports concussion clinic.

      Take Care
      Martin

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  42. Thank you so much for sharing your experience!

    I have PCS from an MVC in January. I could not believe how many doctors told me it was just a concussion and symptoms would be gone within a few weeks. After two months of still having severe symptoms (headaches, eye pain/strain/dizziness), I started to advocate for myself and did my research (like you did) and ended up getting in at a concussion/acquired brain injury clinic, as well as with a neurologist.

    I'm now going into my 4th month of being off work (my injury occurred while on the job) and my BIGGEST and most severe symptom is still very present, extreme pressure behind both of my eyes (which I was told were tension headaches). I hit the back of my head very hard and like you, damaged my occiptal nerves. I was also diagnosed with muscle strain behind the eyes.

    I am also doing vision therapy using a computerized program. I only started a week ago, and can notice how much my eyes have been effected from the accident. So far I have not noticed any improvement with my eye pain/pressure/headaches, so I am hoping the program works.

    I am still waiting for my next appointment with the concussion/ABI program so they can start treatment for me.

    In the meantime I have picked up some Tylenol Migrane/Headache meds for the eye pressure/pain, however it does not really work.

    I also wear sunglasses all the time to help with the light sensitivity.

    Was there anything else you found helped with your eye symptoms? Did you ever have that extreme pressure feeling behind your eyes?

    Thank you again for sharing!!

    Kayll

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  43. Hi Kayll

    I'm really sorry to hear about your accident.

    In my case, I did have a lot of pain at the beginning and was told that my eye muscles were strained. It was explained to me like this: your brain is used to your muscles responding in a certain way and now they don't respond that way anymore so your brain has to re-learn how to control your eyes. And at the same time as your brain is re-learning this, your eye muscles are healing and going back to normal. It will take time for them to heal and get back to normal.

    As I mentioned in the blog, my vision prescription was reduced to put less strain in my eyes and I was told to just live with things being a little blurry for a while.

    I did have the pressure/pain feeling behind my eyes, especially my right eye. For the pain I got the injections and the cream and that made a huge difference. I'd consider going to a pain doctor for that.

    But it still took many months for the pain to go away permanently. I also took a combination of tylenol and etodolac every day to stay ahead of the pain (motrin didn't do it for me and neither did Aleve so I went for etodolac). I took 6 tylenols a day and a full does of etodolac.

    I went through 4-5 vision prescriptions as well (each time the optometrist thought I was insane and overly-sensitive) as my eyes slowly recovered until I was back at a new normal and my vision stopped changing. About every 6 weeks my eyes would start feeling strained again and I figured out it was because they were healing and I just needed a different prescription.

    I was on the computerized vision therapy program too. But I found that the brock string worked really well too. I'd try to add that in if you have the energy. You can find how-to's on Youtube and above.

    As for the light sensitivity, that went away after about 3 months once I got my vision prescription reduced.

    I hope this helps and you keep pushing. On the one hand, it's good to not think about it if you can (but that's almost impossible, I know). On the other hand, focus on the specific therapies that will slowly help you get better.

    Take care,
    Martin


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  44. Hi Martin (ricos),

    Thank you for sharing your story. I suffered a concussion about 6 months ago and the lasting symptoms are dizziness that turns into anxiety and or panic. Or just general anxiety. After seeing many GP's ENT's and finally a concussion specialist they all told me the concussion is no longer there, its all physiological. I made a recovery plan for myself and started on Zoloft a few days ago. You don't mention much details on how the Zoloft affected you, but did you notice things get worse at first then better in a few weeks? I was just curious if you had more to say about the experience with Zoloft.

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    1. Sorry I meant to leave my name, Ross.

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    2. Hi Ross,

      I'm really sorry to hear about your concussion.

      Zoloft - First, I didn't get on it until I was 11 months into my concussion. Second, I tried many other things at the same time, so it's hard to know how much affect it had.

      I started it more or less at the beginning of April, 2015. I also started vestibular therapy then (which I think was the key for me) and the brock string to take care of some lingering convergence insufficiency. I also started the expose and recover therapy then much more than ever before. I just charged back into my normal life, felt bad, rested, then went back to it.

      So I was told the zoloft would not start working until about 2 weeks into it. But by two weeks on the program I was already feeling much better - even before the zoloft could have helped. By the end of May 2015, after about 2 months on this program I was just about all the way better (new normal of above 95% of where I was pre-concussion).

      So the short answer is, it's hard for me to tell how much it helped versus the other things.

      Did it get worse first? Not really, except that it gave me some weird sensations in my head. I could never get to the dose they wanted me on. I stayed at a very low dosage for six months, then tapered off and have never been on it since, though random though very infrequent bouts of anxiety are part of the new normal.

      Either way, anxiety was part of the equation for me. My UPMC doc thought it was caused by the vestibular problems and that the zoloft would take the edge off while we fixed the vestibular problems.

      I can say for sure the zoloft didn't hurt. I was better more or less within two months of starting it.

      I hope this helps,
      Martin





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  45. I had a seizure out of the blue that caused a 1-car accident. The cause of the seizure is unknown although I did have pneumonia that I was unaware of and was under much stress. I broke several vertabrae and my sternum (seat belt or air bag). Although my head did not hit anything, I also had a concussion and was nauseous for several days. I spent a few days in the hospital. I was on pain killers that stopped when I left the hospital, and an anti-seizure medication that I am still on 6 months later.

    I had to wear a body brace for 3 months when not in bed. I was told that the sooner I got out and walked the dog, the better for me, and to do it several times a day. So I walked about a mile a day, but otherwise was on my back for the first 2 months. I saw a neurologist who was pretty clueless, but finally found a good one. I noticed light sensitivity (wore transitions lenses outside even when cloudy), had headaches in the left temple and took several tylenol daily. I also had trouble reading paper and memory and comprehension were not what I was used to. I could read a chromebook and kindle on my lap while lying down because I could increase the type size. The good neurologist said that the bulk of my symptoms were from the concussion, not the seizure or meds.

    After a few months of lying around (which allowed both my bones and head to heal), I started with PT. That helped immensely, 2x weekly for 2 months. I gradually weaned off the tylenol and brace. I went back to the eye doctor I had seen shortly before my accident. My vision had not changed, but this was 4.5 months post-accident. He sent me to a vision therapist. I was tested but not treated because he declined to treat me as I was moving in a month, and he wanted to treat for 3 months. I was not impressed by that stance and after searching around the internet, found that some authorities and insurance companies regard those doctors similar to how many feel about chiropractors.

    I did some eye exercises at home including pencil push-ups. I will look at your links as well. Biking helped. I now wear glasses sometimes to read print. Still wearing the transitions lenses outdoors from my old driving prescription. The doctor wanted me to start wearing progressives but I have resisted that so far. If I find that I need them, I will try them but not today!

    6 months out, I'm doing quite well. Memory is not quite where I would like it. I look good and no one would know looking at me how badly injured I was. Thankfully am largely healed both mentally and physically (and didn't need surgery). Not quite ready to resume yoga, but hopefully soon.

    I did not have any anxiety except frustration at not remembering things, and frustration with paratransit and "the system" (they recall your drivers license for 6 months post-seizure). Also a little more sensitive emotionally than I was but that could also be the anti-seizure meds. I have to rely on a calendar and to-do lists. But we're all a little different. Glad that you're healing; interesting blog. And I'm delighted to be alive and doing as well as I am!

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  46. I forgot to mention that I could not focus on faces for at least a month. I could not look into someone else's eyes for a while longer. The full moon at night was two at first, then elongated. Now it is round!

    And when I said nauseous for the first few days: I threw up every time they moved me in the hospital! Time and rest heals a lot, but working on getting better helps too. We worked on balance in PT as well as strength and flexibility. I still have some back pain and stiffness that I hope will gradually go away.

    ReplyDelete
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    1. Suze,

      I'm really glad to hear your recovery is going well.

      Thank you for sharing your positive story and the things you tried. A lot of people find this blog and the more "data points" they get, the better.

      Delete
  47. Thanks so much. I've come a long way since seeing the ceiling spin every time I would lie down! I'm still not 100 percent, maybe about 90-95%. Doing my taxes this year was harder than normal. Concentration and memory could be better. I hope that I can keep improving, and I'll do what I can.

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  48. Hey Martin,

    This was incredibly insightful. I live close to Pittsburgh and would like to visit UPMC as I've been battling PCS for about 5 years. My symptoms come and go but I would like to get to a point where I am feeling nearly normal again, at all times. Can you share any information on how this treatment looks from a financial standpoint? I am employed full time with good health benefits, but at this time I also can't afford to spend thousands. Any information would help. Thanks so much.

    -Troy in Ohio

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    1. Hi Troy. I am happy to share. I had a Humana PPO. I think I paid around 100-150 per visit which covered 4 appointments. I got everything pre-approved with my insurance and to be honest, I was seeing so many doctors that by the time I got to UPMC I might have already paid my deductible for the year. I'd call them and make sure they take your insurance, ask what the copays will be and then call your insurance to be sure. UPMC might have claim codes they can give you that you can give your insurance. And I'd definitely ask your insurance if any of it will hit your deductible.

      HMO's usually restrict you to a geographic location, so you should check on that too if you have an HMO.

      Hope this helps!
      Martin

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  49. Martin,

    Reading your story has been truly inspirational. I was diagnosed recently with PCS. I had a fall in March. At first I really suffered from no symptoms. About three weeks later I was suffering from severe anxiety. Full blown panic attack. I actually went to the ER thinking I was having a heart attack. Everyone pretty much dusted it off to generalized anxiety disorder. About a week later I went on my honeymoon. This is when the anxiety was the worst. Just like you I was freaking out about the plane. This was new to me, I am an extremely outgoing person and have never delt with all of this. The honeymoon was enjoyable. I had a lot of ups and downs and had to retreat to my room often when I was fatigued. Fast forward to now. Still dizzy and foggy work has become difficult I am a teacher so I have to stay sharp. This past week my wife and I took the day off and traveled to Gates Vascular Hospital. They have an extensive neurology department. They are the ones who diagnosed me with PCS. They referred me to the University of Buffalo's concussion. I guess they are superb. They work with the Buffalo Bills and Buffalo Sabres. I am going to call them Monday to set up an appointment. Is there anyway you could email me with any other resources or possible support groups. At this moment the only person who knows of my condition is my wife. I'm very embarrased. I don't want to worry anyone like my family and coworkers. I'm worried about my job. I have phenomenal insurance and do not want to be laid off because of my condition. Thank you again for this wealth of information.

    Mike

    Mekstrom8@gmail.Com

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  50. There is a good post concussion syndrome group on Facebook. It has over 4000 members sharing their experiences.

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    1. What's it called? Definitely interested in joining it.

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  51. Hey, been suffering from pcs for the last 3 months now, and I would love to ask you a few questions about recovering and your recovery via email. Thanks,

    Zack

    My email is zackfarah@gmail.com

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  52. I suffered an accident in November, then my father passed 2 days later then I underwent surgery on my shoulder that kept in sitting for 8 more weeks. Then slow therapy. I went to see Micky last week and I can tell you that so far UPMC is the bomb, I got back in a month, but this blog has been fantastic to read. I am in the same place as the author I also own my own software company and can go where and when I want. Thanks for this Blog

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    1. Hi CR. Very glad it's been of help. Best wishes for your speedy recovery!

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  53. Hello. Thank you for the valuable information and time you took in putting it together. I am dealing with PCS, just over 2 months in, and have scheduled an appointment to see UMPC. I don't have a concussion clinic in my area, but have seen my PCM, neurologist, chiropractor, massage, had imaging etc. The soonest available appointment at UMPC is the 24th August 17. I have read your website and the UMPC website and have made a little pre-appointment recovery plan. I am supposed to start a new job in one month and not even sure if this is possible. I am wondering if you could contact me via email? It would be greatly appreciated.

    Kerry Scott

    kes48@live.com

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    1. Hi Kerry,

      Yes, I'd be happy to help. But if you can post your questions then everyone else will be able to see the questions and answers and it could help others.

      Thanks,
      Martin

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  54. Hi Martin,

    Thank you so much for writing this blog! My partner has been dealing with PCS for about 14 months. With all of our internet searches and forums about PCS, I'd say it is one of the most useful things we have come across. My partner's timeline, symptoms, and treatments have all been very similar. We are doing neurofeedback, the prism glasses, atlas orthogonal, botox, cranio-sacral, acupuncture, the whole deal. It seems like at different points we have hit 60% or so, but we have had a lot of setbacks. Small bumps to the head, which previously would have been no big deal, result in a major backslide, and they seem to be unavoidable try as we might. Did you bump your head at all during your healing process, and did it cause you setbacks? Do you have advice for how to bounce back from these setbacks and return to the previous baseline? We have an appt at UPMC and are trying to hold out until then. Another question is about anti-depressants; was there a reason Dr. Collins chose Zoloft specifically? I have been doing research and it seems like many anti-depressants seem to have a lot of side effects. Was that your experience at all? Also, did you have trouble getting off Zoloft? Were there any withdrawal symptoms? Also, my partner has an appointment with a psychiatrist this week so we might try the pills sooner. Do you think this would interfere with the UPMC visit on July 11th? Thank you again for your blog and for sharing your story!

    Nataliya

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    1. Hi Nataliya,

      I'm very glad you've found the blog useful. :-)

      To answer your questions:
      1) I didn't have any other head bumps during my recovery, so I don't know how those would affect things.
      2) As for why Zoloft, I'm not sure. His stated goal was to reduce my anxiety, so maybe any anti-anxiety med would work, but since I'm not a doctor I can't really say.
      3) As for side effects, I got this just strange, over-active feeling, like I wanted to keep itching my head when I tried to get to the dose they wanted me to take. That is why I stayed on such a low dose and never got to where they suggested (detailed above). Other than that, no side effects. As for withdrawals symptoms, I had none but I was on a low dosage.
      4) My guess is being on anti-anxiety medicine won't be a problem, but it's hard to say for sure. In my case, I think they thought I should have been on them long before I got there.

      Best of luck at UPMC and if you can please share how it goes here so others can get a few more datapoints.

      Take care,
      Martin


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  55. Hi Martin

    Thank you for posting. Although I'm not entirely sure PCS is my problem, your post helps! I was in a car accident on 1/26/2017. I've had migraines every four to six months but had two in the two weeks following my wreck. Since then, I've had brain fog, mild fatigue, difficulty concentrating, occasional headaches, slight memory problems, and stiff neck/jaw. Over the past three to four months, these symptoms have all seemed to get more and more mild. I am able to work and drive still, but just feel very tired at the end of the day. Thanks!

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    1. Hi Jeremy,

      I'm glad the article has helped. If your symptoms persist, it might be good to be seen at a concussion clinic.

      Glad you have a mild case though!
      Martin

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  56. Hello Martin,

    I have been dealing with PCS for about 2 1/2 months. I have had 2 concussions within the last year. One from a MVA last summer, that one healed within a month. With the most recent concussion I hit my head on the cement. I wasn't doing anything too crazy, just some exercise it the backyard. I didn't even think I hit my head that hard, but I guess now I am more easily concussed. I have been having daily PCS symptoms since.

    I have set up an at home "brain rehab" plan based off your website as well as some advice from a neuro rehab specialist in my area. There is no multidisciplinary concussion clinic near me. I have an appointment at UPMC, but it is not until 24 Aug. I have had to postpone a job that I was really looking forward to. I also just want my life back. I am wanting to be proactive until my appointment at UPMC. I know many people have gone through this for long periods of time and I have a lot of praise for them, because it is noooooo fun.

    My daily "brain rehab" consists of the brock string and convergence training, and vestibular and balance drills from your website. I am doing the training every day. I am also doing daily cardio for about 30 mins. I am eating healthy, no processed foods, a lot of water, and some vitamins. I am also trying to get good sleep.

    I noticed on the UPMC site that there are different types of concussions. Six types: vestibular, ocular-motor, cognitive, post-traumatic migraine, cervical, and anxiety/mood. I think mine is more like a post-traumatic migraine/cognitive concussion. I don't notice much dizziness or ocular problems, but am still going to do the exercises for them anyway just in case it may help.

    I have a daily pounding/heart beat in my head, all day, every day since I hit my head. The headache sometimes gets worse if I bend over or sit up too fast. I feel my head pounding on my pillow every night. The cognitive things include a feeling of brain fog and spaciness. I have a hard time in social settings and with too much going on, this makes the brain fog and "out of it" feeling worse. It's like I just hit a mental wall and cannot go any further. I have noticed that I have a hard time thinking of the names of people and of objects as well. I think the cognitive problems are the most scary for me. It's like I know the name of the person or object, but just draw a blank. I feel like I am trying to think through molasses.

    I was wondering if you had some of these cognitive problems during PCS? I am kind of confused as to what might help with the cognitive/migraine type of concussion. It seems you had more ocular/vestibular related concerns with yours as well as some other symptoms mixed in. It also says on the UPMC website that even though there are different types of concussions that many symptoms overlap.
    I am wondering if you learned anything about the cognitive/migraine symptoms or treatments on your trip to UPMC. I know it is a stretch to ask you this. I'm just trying to get any possible information, and thought it was at least worth a try. Or maybe someone else on the site has some information on this or their process through recovery.

    I really appreciate you taking the time to put up this site and answer questions. PCS can be a lonely and hard road and it is definitely hard to sort out what may or may not help.

    Thank you Martin.

    Kerry

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    1. Hi Kerry,

      Really sorry to hear about your concussions, but glad you have an appointment with UPMC.

      Your appointment is two months out, so I can see why you want to try things in the interum. Your rehab routine seems right on, though as I always remind people, I'm not a doctor.

      As for cognotive problems, yes that was part of it. My fatigue wasn't physical, it was mental fatigue. That's the phrase I should be using. The day after my concussion, it took a minute or so for me to recall the year. My mind was just incredibly slow and got tired very fast. My memory was bad (though it always is for certain things like names) and so was my processing speed.

      I think on the one hand, when I cleared out the pain (occipital neuralgia), my mental strength got better. On the other, I think it just took time for my brain to heal. Doing the cardio / Buffalo Protocol also seemed to make a big difference, for whatever reason. All those things together got me to about 50% normal about five months after my concussion. The rest was probably vestibular problems making me anxious and tired and a need to acclimate my healed mind back to the world through expose and recover.

      When I got to UPMC I did terrible on the initial cognitive testing. The vestibluar and other therapies actually got me back up to normal within about a month even though they weren't directly targeting my mind. Their explanation was that vestibluar problems will make you mentally fatigued becase your brain is always on high alert because it always feels like it is falling.

      I also came to think of it like recovering from a stroke. You have to retrain your healed brain because in some circumstances, it's like a formatted hard drive. It no longer has a program for things you used to do without issue, like for me driving while also talking or listening to the radio, or all 3 at once. Doing all those things made me tired and what they said was when you find something like that, you have to carefully expose yourself to the stimilus, rest when you get tiredk, and expose yourself again. Eventually, if your mind is healed and ready for it, you'll get used to it again it will be no big deal. By the time I got there, they thought I was way overdo and ready to jump in, but everyone is different.

      Hope this helps and please share your UPMC and any other experience here so others can see it.

      Take care,
      Martin

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  57. Oh, also I was thinking. I wonder if the "expose and recover" works with the cognitive stuff. Neuroplasticity, maybe?

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  58. Martin,

    Thank you so much for the thoughtful response.

    I definitely have the mental fatigue and problems when my brain is trying to do more than one thing at once. I like how you explained it as a formatted hard drive.

    I know you are not a doctor, but do appreciate this site and having access to some information that I wouldn't have had otherwise. You know what helped you, so it is great of you to share that.

    I will update here with anything I find helpful. Thanks so much.

    Kerry

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  59. Hello,

    Thank you so much for this. I am a fourteen year old girl who had a brain injury about four months ago now and still deal with headaches and light/noise sensitivity. It seems that my cognative ability wasn't affected whatsoever, but the headaches are both painful and frustrating. I recently went to Dartmouth's concussion clinic and have been doing PT exercises (the kind you described where I move my finger and follow it with my eyes) and doing neck stretches as well. I've had several good days but the headache always manages to return and I haven't felt like myself since the injury. The headaches are usually brought on/worsened by physical exertion (which is extremely frustrating because I've always been fit and active) or electronic use.
    Most of all, I hate how my mind has become obsessed with the injury. It's the first thing I think about when I wake up in the morning and the last thing at night. I am constantly asking myself: "Do I have a headache right now?" I've felt depressed and hopeless for months. My doctor seems to think everything is fixable, but it's so difficult for me to see the light at the end of the tunnel. I am not sure, but I feel as though my injury has brought on both anxiety and depression. There are so many horror stories of people having life-long headaches and I've convinced myself that I'm heading in the same direction. I've also spoken to friend who've had concussion recently and they all recovered with a week or so, which is ridiculously frustrating for me to hear.
    Sometimes I find that I'm not even sure if what I'm feeling is pain, or if I have just begun to imagine it.
    Anyway, thank you for this. And if you've read this, thanks again. If you have any comments or advice, it's much appreciated.

    - Anya

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    1. Hi Anya. Sorry for the late reply. I wanted to carve out time to give you a thoughtful response.

      It's interesting that you say that you have a headache with physical exertion. If it happens with an elevated heart rate and it feels like "a rubber band around your head" then the Buffalo Protocol might help. You might try to get a heart rate monitor, get your BPM up, and see if that is the trigger. Figuring out the triggers will help a lot, but it's a lot harder than it sounds to do.

      As for headaches getting worse with electronic use, that sounds like a vision issue and hopefully you're on the right PT for that. Your eyes also just take many months to heal. They should heal naturally, but the PT will help and there are some other things that might help. I got a computer vision prescription and that did wonders. Basically, you're given an eye exam what you are reading is an arms length away. Computer glasses are part of my new normal. I'm wearing them as I type this, but I can go all day if I have to.

      The other thing that might help is a pain doctor. Some doctors want to avoid this and wait it out for quite a while. I went within 6 weeks of my injury and got the injections I spoke about. It might be worth it to see if they can test you and see if they think there is nerve damage that they can help with.

      As for anxiety and depression, yes that's just part of it and it might be the first time you've ever experienced it. Anyone who gets sick and doesn't get better in a reasonable amount of time will get anxiety. And if your mind starts coming to the conclusion that you might never get better, then that worry becomes despair and depression.

      What helped me was having a plan, doing the PT, and counting all the small victories.

      When I was finally seen at UPMC, they thought I really needed to just stop thinking about it and relax (I was keeping detailed notes of everything - though this did help me find some patterns). That's why they put me on zoloft, which is more of an anti-anxiety drug, and told me to stop taking notes and stop thinking about it. They thought that the anxiety had sort of taken on a life of its own and was holding me back. That might be something to consider - an anti-anxiety medication until you're past it all.

      I hope this helps,
      Martin

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    2. Martin,

      Thank you for your thoughtful comments and suggestions. I will certainly try several of these out, and continue to collaborate with doctors until the issue is resolved.

      Thanks again,
      Anya

      Delete
  60. Hello

    Do you feel like your old normal self again or do you feel "different"?

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    Replies
    1. Hi Adrian. I am the same new normal as before. You can find the details above in my response from February 3, 2017. Not much has changed except I've done a little more work on my mild claustrophobia.

      Martin

      Delete
    2. Hi Adrian

      I am the same as when I last reported. You can see the details in my response from February 3, 2017 above. Not much has changed.

      Delete
    3. I understand how you feel with that question on feeling "different". It's been 17 months for me and I don't "feel", like myself before the accident. Even as things get better I just don't feel like my old self. I often find myself "acting" like my old self but it's not genuine. Like I'm playing a roll and I do it hoping I find myself again and as to not worry my family and friends. Not sure if that came from the high anxiety, which caused depression, that I went through and hopefully that's settling and I'll get back to me. But it's scary. BTW... I'm NOT the author on this, just happen to have similar names.

      Delete
  61. Thanx Rico's...

    As I am 3 months in and that's fairly fresh for pcs. I have hope this pass soon and I will be back better than ever!!!

    ReplyDelete
  62. How can I contact you besides here?

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    Replies
    1. Hi Adrian. My preferred option is to communicate here so others can see the questions and answers. If you have something very private you want to ask me, you can fill out the form at martinrico.com and then we can talk via email.

      Martin

      Delete
  63. Hi Martin,

    Thank you so much for writing this article amd fighting the good fight.

    Two months ago, I came up too fast unwittingly under a short Asian doorway made of concrete, amd my head got a good smack. No loss of consciousness, but I'm definitely dealing with some PCS symptoms.

    My biggest issue right now is getting up in the morning. I might go to bed at 1am, then have difficulty getting up at 9 or 10am, and not finally get up until 12:30pm. Then, sometimes after eating breakfast, I am extremely tired and need a nap.

    I am wondering if you or any other PCS warriors have suggestions for getting up and having more energy in the morning, and functioning around sudden bursts of fatigue.

    Thanks,
    Aaron Smith

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    Replies
    1. I am also taking 3mg of melatonin to help me sleep. Yes, I should get to bed earlier. Often I intend to, but I am a bit of a night owl, amd well the PCS does not help either.

      You mentioned feeling your brain when it is irritated. I found a simple rememdy for this is putting your head under the faucet and running cold water.

      Thanks again.

      Delete
    2. Hi Aaron. Sorry to hear about your situation. As for getting through the fatigue, that's the magic question. It took me a long time to get over it. The real trick is figuring out the root cause and that is not easy. It could be your vision or vestibular (balance) or something else.

      My best advice is to go to a concussion clinic because if they are good they will run a battery of tests to see what is causing your symptoms, plus they will have the right therapies for each symptom - usually vestibular and vision.

      The only easy thing to diagnose on your own would be convergence insufficiency. There a lot about that in the content section of the blog and on youtube.

      Hope this helps and best of luck with your recovery!
      Martin

      Delete
  64. hi ricos!

    just wondering when you had setbacks how long were they for? and what symptoms did you get when you had a setback?... i feel when i over exert myself even though i dont feel like i am at the time the next day or so or week or weeks after i feel like i was reconcussed all over again if that makes sense! thank you

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    Replies
    1. Hi Elizabeth,

      I had that same feeling at the beginning. When I overdid it, I had a "brain on fire" feeling that I talk about in the article. After that, I'd need days to just get back to where I was.

      I think what ultimately fixed that was the buffalo protocol. Because I had several serious issues all happening at the same time, it took a long time for me to realize that a heightened blood pressure was part a trigger. Then I had to learn how to keep my blood pressure low and then how to use the buffalo protocol to get my brain / blood pressure regulation system working again.

      Anyway, the when I had a setback, I'd feel like there were rubber bands around my head and I'd want to be locked in a dark room and not disturbed for a day or two. Then I would go back to whatever the normal was at the time.

      Hope this helps!
      Martin

      Delete
  65. Hi RIcos

    Great blog - it has helped me loads. One quick question in terms of exercise in particular, and the 'expose and recover' approach. Specifically, if you pushed yourself too hard and felt rotten the next day, is the idea that you continue exercise the next day, or wait till you feel somewhat better?

    ReplyDelete
    Replies
    1. Hi. I'd say it depends. Making yourself feel bad is the point, but not so much that it takes days to recover. If it takes days to recover, you are probably pushing yourself too hard. I'm not a doctor, but that was my experience. Hope it helps!

      Martin

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    2. Hi Martin

      Forgot to reply to this. Thanks so much for the response. That was the approach I am taking, so its nice to hear that you did similar.

      As a very keen runner before my accident, it is hard to reign it in and be disciplined, and as a function i have had a few setback. But now pragmatically i know that pushing it is only going to delay full recovery further.

      Thanks again

      Delete
  66. Hi Rico's!

    How are you feeling these days? Any limitations?? Residual symptoms at all? & When your were Going thru pcs, did you have a certain diet you followed?

    Thanks👍

    ReplyDelete
  67. Hi Adrian. Still doing well. Pushing on some of the last bits of my symptoms through expose and recover, like discomfort on planes.

    As for diet, I might have dabbled in that, but I don't think it made any difference so far as I could tell.

    ReplyDelete
    Replies
    1. Ricos, I am about 3 months into this and you describe my situation pretty well. I have begun to get very frustrated and feeling like this is going to be forever. I am currently in therapy and Ill feel good for a week, and then another set back. But, reading your account gives me some hope for the better. Thank you! I hope you are well.

      All the best.

      Delete
  68. Hi Ricos,

    Thank-you so much for sharing all of this! I've been thinking of doing something similar or trying to "give back" in some way once I get through my PCS. I'm 15 months in from an accident while playing hockey - which was oddly a fairly small collision with another player in a non-contact league. I continue to be told that sometimes that is all it takes.... Despite all my frustration, I do feel as though I have been continuing to progress.

    My most difficult tasks are driving and computer screens. Unfortunately I'm an engineer and my job involves working on a computer roughly 8 hours a day. I have seen a vision specialist to work on my convergence and divergence, and now I've retrained my eyes to that of an average person, but I'm still struggling with screens.

    My big question for you is - How did you increase your screen tolerance?? I'm assuming you can handle more than an hour spread out through a day now?

    Hope all is well,

    Chris

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    Replies
    1. Hi Chris. Sorry to hear about your concussion. I used the brock string at home to get my convergence insufficiency fixed. It was really bad. Also, I got a pair or prescription computer glasses. Essentially, you take an eye exam with the letters at arm's length and have a special set of glasses. That helped me a lot. I'm wearing those glasses now and have no trouble staring all day at screens anymore. If your injury is like mine, those two things will help a lot. If it's different, you might need to keep trying things.

      Hope this helps!
      Martin

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    2. Thanks Martin, I will be purchasing a pair of those computer glasses from my specialist in the near future. Fingers crossed that makes a difference!

      Did you find that you had to gradually increase your screen time? I'm assuming you must have started out with smaller amounts and slowly increased using your expose and recover technique, is that about right?

      Delete
  69. Hi Ricos, my 14 year old son got a concussion 5 weeks ago in a ski racing accident. His symptoms sound very similar to yours (eye pain, visual difficulty, trouble reading/concentrating, etc) and occipital neuralgia with daily headaches, sensitive to touch of his head and neck. He can't do any school work. You seem very happy with the UPMC program. My question is if you had to do it over again, would you still go to Johns Hopkins first for the treatment of your vision problems and occipital neuralgia? Or do you think these are things that could all be handled within one concussion clinic (UPMC or elsewhere)? We're in the Boston area. I want to get him to the people with the most expertise for his particular symptoms. It sounds like Dr. Singman is wonderful for post TBI vision problems and might be a good fit. I just wish he were up a little closer to where we live! Thank you -- Nicole

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    Replies
    1. Hi Nicole,

      Very sorry to hear about your son. Your question is spot on and unfortunately I can’t answer it because I don’t have any experience with the vision / pain doctors at UPMC. They might be great, but I have no idea. You could try UPMC and see if they can take care of that too and if not, head to Dr. Singman for sure.

      Delete
  70. Thanks, Ricos. I really appreciate that you wrote this blog! Thanks for sharing all of your story.

    ReplyDelete
  71. Thank you for your informative blog! After years of unresolved post concussion symptoms, you have given me hope and inspired me to seek further help at UPMC. Because they are a “sports concussion clinic,” with most of the information on their website pertaining to young athletes, I have concerns about the appropriateness of my seeking care there. Because my concussion resulted from a fall, and I am in my sixties. I would appreciate your thoughts on this. Thank you!

    ReplyDelete
    Replies
    1. Hi. Yes, I had the same apprehensions because I was in a car accident (not a sports related injury) and was around 41 at the time. They had no trouble treating me. If you call, they might be able to give you some guidance. If you just go and get evaluated, I am sure they will then be able to tell you if they can help. They’re good, trustworthy people.

      Delete
  72. Hi All,

    Me again. I am back here looking for more recommendations on what to do. I had followed a lot fo this and was feeling like 90%-95% better in mid January, but I was still on the Imipramine that that (worthess) nuerologist gave me. I met with that doctor again thinking they will take me off this med and get me back to normal, finally. They suggested weaning off the meds 25mgs per week for 6 weeks to get me compeltely off it. 2 weeks ago I was completely off it, but since then I have fel aweful again, to the point that I was terrified the symptoms returned. I was exercising 45 mins per day and working full time, and I was doing great. Now, I feel like I have regressed. The fogginess and migraine-like headaches have returned. Not in full force, but noticeable that I am so tired when I am home from work and I feel like I am in a daze again. I saw my regular doc and she thinks the meds were masking the symptoms and that I wasn't totally better, or, I also read online that the imipramine (an anti-aniety medication that is also used for concussion and migraine treatment) can cause a lot of withdrawal symptoms. Either way, I feel not great again and just want this to go away. I don't want to go back on these damn meds ( I don't think I should have had them to begin with), and want to know if I need to just go back to the gradual recovery as before. I just dont know what to do now as i thought I had gotten better and been through the storm. Background - I got a concussion in July 2017 and got the PCS in August 2017, and was basically recovered by Jan 2018. Thanks all!!

    ReplyDelete
    Replies
    1. Hi Andrew. Sorry to hear about the backsliding. I know I've said I'm not a doctor many times, but just to reiterate, I'm not a doctor :-).

      That being said, in my situation I'd spent 11 months on the slow recovery train and only gotten about halfway better. Dr. Collins at UPMC put me on Zoloft right away. It was a very low dose because I could not tolerate much. The thinking was that this would calm the anxiety I was having that was caused by some underlying conditions that they would treat simultaneously. These were the vision and balance / vestibular problems I was talking about. Based on this reasoning, it seems like you still have some underlying things that are causing anxiety and without the medication it's back and so are your symptoms. So I'd say you need to find someone to help diagnose these (vision, balance, PTSD?). It sounds like the drugs can mask your symptoms, but if you want to get off of them, which sounds reasonable to me, then you'll probably need to figure out what is still wrong and work on it. Perhaps a lower dose so you can function better, but still have some awareness of the issues so you can work on them? In my case the thing that caused stress / anxiety were vision, vestibular, and PTSD-type issues.

      Hope this helps!
      Martin

      Delete
  73. This comment has been removed by the author.

    ReplyDelete
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    1. Hi. I see you deleted your post. Let me know if you want me to answer your questions. I'd be happy to.

      Delete
  74. Hi Martin, I know you are no doctor, but your practical advice has been much more helpful than any of the many doctors I have seen across this terrible experience, so there is that! I've been checked for vestibular issues back in October during the "worst" of it, so I know that isn't an issue. The doctor now thinks that the symptoms from before just haven't yet gone away, which is semi-reasonable, but I really don't want to go back on the medication when I've now been off for 3 weeks and even though it's not totally better, it isn't worse. The doctor thinks I need to slowly recover again like before, but this time without medication. I know even on the lower doses I wasn't feeling great, so I don't know! Besides the Zoloft, what physical things can you recommend? At work, I work for 45-50 minutes and then take a break, and try to do that every hour. This is how I got back to work originally, when I started with 4 hours at home, working 45 minutes, resting for 15, then went up to 6, 8, etc. per day with the rest breaks. Seemed to work, and I want to try to do it again. I also switched jobs while I was getting of the meds, so there might have been some stress that I still might be dealing with, although getting off the meds definitely had a big effect. I exercise each day as well on the treadmill since it is so cold outside, and trying to go up 5 minutes ever 5 days or so. Either way, thanks again for the continued help!

    ReplyDelete
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    1. Hi again Andrew,

      As for physical things, it really depends. Do you get symptoms when your heart rate goes up? If so, the Buffalo protocol will help. You’ll need to follow the protocol precisely for it to help. If you just have anxiety, I would look for triggers and then go through a process of expose and recover. Driving was a trigger for me and especially driving down the street where the accident was. I went through a process of expose and recover until the anxiety was gone. Maybe get your vestibular rechecked and really note any small issues to the therapist and then get on a therapy program. In my experience, it was all about finding specific issues and doing therapy for them. I think part of it was also just time and natural healing, but when I found specific treatable issues, I was able to race ahead more quickly.

      Well, that’s my 2 cents. I hope it helps!

      Delete
  75. Hi Ricos, another question for you: Does expose and recover work for "brain fog" or mentally fatiguing activities, as far as you know?

    Thank you,

    Nicole

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    Replies
    1. Hi Nicole. Sorry for the late reply. I had trouble with this website when blogspot folded into blogger.

      I think several things were giving me brain fog and I had to tackle each one in turn. First there was just the internal brain injury and that needed months to heal. Then there were my vision problems. That took many months and the right treatment. Then there was the occipital neuralgia, which took a while to diagnose and then about 6 months to get better. Then there was the issue with the blood pressure in my head, which is what the Buffalo Protocol was supposed to be addresses. Then there was an issue with multi-tasking and the neuro-feedback helped with that. Finally there was the vestibular issue, which was the last thing holding me back. All of these contributed to my brain fog and I wasn't really better until all of the issues were diagnosed, treated, and healed.

      I wish there was a shorter answer!
      Martin

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  76. Hi Ricos,

    I first want to thank you so, so much for providing such thorough information about your PCS. I am suffering from PCS amongst other problems and I am now 6 months in of dealing with it. It is truly the most horrible thing I've gone through and reading your story mirrors so much of what I've been experiencing. I feel like it's difficult for anyone in my life to understand and incredibly frustrating so I've basically begun to isolate myself. I can go on and on about how this has drastically changed my life so badly, but what I'm really becoming concerned about is my young daughter. How was it confirmed that your young children sustained concussions and had PCS? If you don't mind me asking, how old was the youngest at the time of the accident? With my daughter's behavioral changes ever since the car accident we were in, I often worry that she also sustained a concussion that was not identified & if she has a form of PCS. How did your children recover? What were the signs that they displayed? Thank you so much.

    ReplyDelete
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    1. Hi Survivor. I know what you mean. I wound up getting very isolated because I just couldn't take much social interaction. It drained me so completely of energy so quickly. As for my two children, they were about 5 and 7. When I went to Hopkins, they went to Kennedy Kreiger and it was confirmed then. They were very different for a long time afterward. They had a very short fuse as is often the case with people with PCS. There was not much prescribed for them, I think, though my wife was really the one in charge of their care. Two years after the accident we realized they really hadn't recovered. We are about 4 years post accident and we are still working on them, though they are almost completely healed now. My daughter, I think, is totally better.

      The summary of what we did is this:
      1. Took them to see Dr. Singman, who confirmed their symptoms were still present. They were prescribed vision therapy. This was really costly, because our insurance would not cover it. My son is still in this, though we hope it will wrap up soon.
      2. Took them to UPMC. They were found to have vestibular problems, especially my son (he was on the same side of the car as me and that could have something to do with it.) The vestibular lasted about 5 months. They hated every minute of the home treatment program.
      3. Once their eyes were good enough, we were told to take them to LearningRX to work on rebuilding their memory skills, which were impacted. I'm actually writing this in the waiting room of LearningRX.

      At this point, after a brutal year for them (challenging college prep school, 2-3 vision therapy sessions a week, 2-3 LearningRX sessions, and 1.5 hours of homework a night) I think they are about back on the trajectory they should be on. Both were just in the A honor roll. (Kudos to my wife for leading the charge on all of this!)

      Anyway, getting them checked out when you can is the right thing to do. Mine seemed to bounce back much faster than me and neither had the extreme fatigue that knocked me down for 14 months. But they were affected and they did need treatment.

      Hope this helps!
      Martin

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  77. I am currently debating between UPMC and Mayo Clinic for further post concussion care. Did you ever consider seeking treatment from Mayo Clinic's Concussion Center? Like UPMC, they offer a multidisciplinary team approach, and their website makes references to addressing autonomic dysfunction that I have. Though I don't see that mentioned on the UPMC website, I'm thinking they likely deal with autonomic dysfunction as well because many concussions result in this issue.
    I very much appreciate any input you can give me!

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    Replies
    1. Hi. No, I didn't think of Mayo at the time but should have. One of the main reasons I wrote this blog was to let people know that good concussion clinics are out there, you just need to get to them. I spent a lot of time spinning my wheels and getting nowhere seeing one specialist at a time.

      All that being said, my only real experience is with UPMC. Mayo, of course, is usually as good as it gets, so they certainly are worth a try. But I always recommend UPMC, because I know they helped me and have helped others who I've met through this blog.

      Delete
  78. Hi
    Thank you for your blog, I’ve found it very interesting. I first found you 2 1/2 years ago when I first had my problem (weight dropped on head in gym) thought I’d healed it, went back wards, healed it went backwards, healed it and the started to get a few symptoms back recently. I’m an intelligent guy and have tried and evaluated *everything* in this whole time period. My question is, do you have down days/weeks or longer where you think “uh oh it’s back” and if so what do you do about? I’m thinking I’ve been overdoing everything a bit and my body is just giving out a little at its weakest
    point (my injury) and wants some rest and self care
    Many thanks
    Nick

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    1. Hey Nick. Really sorry to here you're still fighting this, even if only intermittently. There are a few things that I know that can still set me off. Really loud environments with lots of people where there is not an easy exit, can be an issue. Also, for whatever reason, listening to books on tape for 2-3 hours or more can cause me to have that tired, brain fog / brain fatigue feeling (figured this out on a road trip). In all of these cases though, rest gets me back to normal. I suppose I could try expose and recover to get over these things, but I'm fine like this I guess. :-)

      So I would have a down day or half day if I am exposed to one of those things. Otherwise, no. And never more than a day or what is left of the day. The truth is, these were 2 occurrences only. I listen to headphones while my family listens to a book on tape during road trips. (Music does not bother me for whatever reason.)

      If rest fixes your issue and you go back to your new normal, that's great. If it's interfering with your life, there must be some cause and, as I always say, some place like UPMC is good at isolating those weird things that cause symptoms. Once you know what it is and how to reproduce it, expose and recover could fix it, especially with the oversight of a doctor who's seen the issue before and helped others get better.

      Hope this helps!
      Martin

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  79. Hello, I would like to ask if this was the first concussion in your life? And do you feel 100% like before, or any less? I would be very thankful for the info :).

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    1. Hi John. It was the second. At age 4 I ran into a pole head on and knocked myself out. (I hope you still think I am a decent person to get advice from... :-)

      I played soccer in school and no contact sports as a child, except at home, so my head has not been banged around much.

      As for 100%, no but close. 95% maybe? I just answered Nick with some strange instances that would still cause symptoms. Plus my vision is worse. I temporarily had a fear of flying (actually of being locked in a plane) but that seems to be over. I've flown lots and each time my anxiety is less. It's close to gone now.

      -Martin

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    2. Oh, thanks a lot. Mine concussion that started the PCS was the third in my life. So this gives me hope on recovery :).

      Delete
  80. Hi Rico, Thank you so much for taking the time to share your story. I cried throughout your article. You are the first person to describe what I have been living with for nearly 7 years. I have felt crazy and alone for so long. I too have had unhelpful doctors advice who do not understand what I am going through. I suffered a concussion in September 2011 and I still struggle daily with symptoms. I have learned to get through my days and hide what I am going through because people just don't believe or understand how I can look so normal and have these symptoms. I do not have the financial means to take time off of work but I do push myself when my symptoms are manageable, partly because I think I may be getting better and partly because I have always been EXCESSIVELY active. I DO NOT like to sit, so obviously when my symptoms are bad where I have to rest, I have great depression. My anxiety attacks happen mostly in the middle of the night, which then I have to walk off, which then I am missing sleep, which then in turn causes my head craziness for the next day and then I work on a computer for 8 hours! I only get relief on the weekend, but then I have so much to take care of that I can't rest. My son also is going through this now and it is breaking my heart to hear him struggle. He is 2 years into his post concussion. I live on the east coast and he lives on the west coast. Do you know if this treatment works on someone who is in post concussive state for this long? I am desperate for some help, even if it is just for my son. I really would like to have a conversation with you if that is possible? I have so many questions and you are the very first person who is actually speaking the language that I can not seem to get anyone out here to understand. Thank you atleast for that..I am happy to hear you are doing so much better. - Robbin

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    1. Hi Robbin. Sorry for the late reply. I had problems accessing it after blogspot folded into blogger.

      As for your questions, I know that the people at UPMC told me that yes, people who have had issues for years were able to get help there. If it is just a question of not getting the right diagnosis and treatment, then yes they or another good concussion clinic can help.

      If you want to talk, please send me your contact information here: www.martinrico.com and I'll get back to you.

      I hope you're doing well and making progress!

      Martin

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  81. Hello Rico,

    Thank you for your blog and continued participation in the comments section on these pages.

    My concussion/TBI was in July of 2017 and I feel that I've made a lot of progress but I have two major remaining symptoms:
    1. Strenuous physical activity produces a congestion feeling/pressure in my brain that can last for 4-5 days.
    2. I don't have the highs and lows of emotions that I did before. There's no feeling of endorphins that I would get when something great happened with my family or one of my patient or when I was in that "flow" state when I was really engaged with an idea or work or with someone in an engrossing conversation.

    My questions are:
    1. Did your highs come back? Are you able to feel giddiness and excitement and those endorphins when engaged in activities that bring you joy?
    2. More complicated: When you're exercising and the brain fog/fatigue/congestion feeling/pressure sets in, did you wait to get back to completely symptom free or did you wait until like 60-70% of the symptom resolved and then went back and exposed yourself to the symptom? I'm currently experiencing fear about inducing symptoms during exercise and activity and wanted to know what worked for you.

    Thank you very much for your efforts on this site.

    Sincerely,
    Joe

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    1. Hi Joe. Sorry for the late reply. I had problems accessing it after blogspot folded into blogger.

      The pressure in your head feeling after strenuous exercise sounds very familiar to me. The Buffalo Protocol or whatever the latest treatment is like that could help. Once I completed it, strenuous exercise no longer bothered me.

      As for question 1, I'd say yes. I can laugh and laugh with my kids and with friends, but this was not one of my symptoms. I've read about other people who have that and unfortunately since I haven't I can't be much help there.

      As for question 2, I went light on myself during the buffalo protocol, in part because if I went too far I would be down for days. Now, I am not sure if I was doing that right, because I never went to Buffalo. What I have read subesquently is that the doctors at Buffalo push you pretty hard. And when I learned about the expose and recover concept, this made more sense.

      But getting to your actual question, the idea was to exercise at a level that did not induce symptoms, but was just below that level. So I would hold at a certain BPM for 3 days, then shoot for higher and back off if I induced symptoms. If I went overboard and had serious symptoms after a run, I would sometimes wait a day or 2 and start over. This happened a lot more than I would have liked. There were a lot of fits and starts and start overs, if that makes sense. It was a messy process.

      So short answer, if you overdo it, rest until 90-100 percent better. That's what I did anyway.

      Hope this helps!
      Martin

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  82. Hello. My son endured a concussion and his symptoms lasted approx 5 months. He seems ok now but still has convergence insufficiency. Do you know if concussion symptoms can go into remission and then re-emerge at a later time again?

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    1. Hey there. The thing that really kept me down was the convergence insufficiency. They can actually test for it (push the doctor for this test - mine almost didn't do it but I was persistent). Once I took it, and they were like "oh, wow, you do have this" they gave me eye exercises, and after 4-5 weeks of doing them 2x a day, it pretty much knocked it out. As of last week it was a year to the day I got injured, and though I am not quite sure if I am "normal", I finally feel "normal" enough that I don't really notice symptoms anymore. I thought it would never go away, but you need to look at it this way - there are other conditions you can develop from the concussion like the convergence insufficiency. The doctors will only focus on that. It was only after I did my own research after my symptoms persisted that I said enough was enough. Be an advocate and think outside the box, because if a doctor says "well, it might take more time", and it already has been a lot of time, then you need to find another who will look for other answers. Arm yourself with as much info as you can and be an advocate for your (or loved one's) health. Living with these symptoms is terrible and just not an option when you want to live a normal life post-injury! Keep it up and hang in there - it's hard on you too because you're worried about your son. My wife was devastated for a year trying to help me figure this out - it was bad for me but it is also bad on those who love you and want you to feel better. Let me know if you ever need more help as I am happy to help!

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  83. Hey man so you can exercise without headaches anymore?

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    1. Because if you can I want to know if that is possible my only symptom that I have is headaches and sometimes dizziness

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    2. Hi. Yes, I can. Once I cleared out all of my many simultaneous problems, I could exercise without headaches. The main treatment that helped in this regard is the buffalo protocol.

      Take care
      Martin

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  84. Hi Rico,

    Firstly thank you so much for sharing such a detailed, inspiring and, above all, positive account on concussion recovery.

    I’m a 21 year old University student and rugby player from the UK. Having recently sustained a 3rd concussion in 3 years I’ve had a (all clear) CT scan and have finally come to terms with the fact I will never play the sport again. I’m finally at peace with the fact that I have to focus on recovery and have been trying desperately to find positive accounts of concussion recovery that I can identify with and apply to my own situation.

    I’d love to connect with you and discuss your testimony properly if you’re not too busy/if this thread is even still active...

    Please drop me an email at your own convenience: jecakebread@gmail.com

    Thanks again for sharing and I really hope to hear from you.

    All the best,

    John

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  86. My son is dealing with Traumatic Brain Injury, Post Concussion Syndrome and we can not find anyone able to help us. It looks like there are people who can help, but we live in Southern California and not Pittsburgh. Do you know of anyone in Southern Cal that is able to help or do you know anyone that might know someone? We are having a hard time finding people who understand this.

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    1. Hi Scott. I'm so sorry to hear that your son is going through PCS. Unfortunately I don't really know anyone in that area. I would look for someone who examines all of the dimensions covered by UPMC on their first visit. You're looking for a practice that understands that someone with PCS probably has multiple, simultaneous injuries with overlapping symptoms. If they understand that, they will want to have many different specialties examine him on the same day and confer among themselves to try to get the right diagnosis.

      Hope this helps!
      Martin

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  87. You say that "my vision started getting better and I was hardly using sunglasses after about four weeks with my new glasses". Does this mean that you were able to be outside on a sunny day without visual symptoms? Were you basically free of visual symptoms (light sensitivity, blurriness, anything else) by this time? If not, were you basically free by the time you went to UPMC?

    I have PCS with similar symptoms/early trajectory as you, although less severe. Have an appointment at UPMC in a couple weeks, but still have noticeable light sensitivity and sometimes objects look blurry or just not quite normal. I'm concerned that the expose and recover process that UPMC will recommend will result in severe mental fatigue and other problems as my vision problems appear to be worse than yours were when you went to UPMC (pending your response to the questions from the 1st paragraph). (I got a weaker prescription from a local opthomologist, and glasses are coming today). My plan right now is:
    -start wearing the glasses when they come in
    -keep doing the vestibular and vision exercises recommended by local people (I've been seeing a local concussion clinic)
    -do whatever UPMC recommends, even if vision problems are still there
    -see Singman (have appt March 12 with him)
    Would you recommend doing anything differently?

    Great blog, you've provided info that has the potential to help tons of people. Appreciate it.

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    1. Hello. Let me see if I can help with these questions.

      My vision got good enough about 4-6 weeks after I saw Dr. Singman at Johns Hopkins. Two things happened there at the same time. First, my prescription was reduced (I don't remember by how much), leaving me seeing blurry. At the same time, I got injections to fix my occipital neuralgia. And actually, the third thing is that all of that time passed, so some natural healing would have been going on. And after all of that, yes, I could take the outdoors without sunglasses. I don't think it was a night and day kind of change. I still had to not overdo it, but it was a huge difference and after that it was a slow recovery process for my eyes.

      Many months later, by the time I made it to UPMC, my vision problems had mostly cleared up. (They figured out I still had convergence insufficiency.)

      Your question about how UPMC will handle vision issues is a good one and I really don't know, since I was mostly healed up by then.

      Your plan sounds great! You're going to see some great people and they will come up with the right plan for you.

      Please let me know how it goes.

      Take care!
      Martin

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  88. I cannot thank you enough for the time and effort you put into your blog! I am beyond appreciative because you have made an amazing difference for me, and likely many others. Through your blog, you inspired me to seek treatment at UPMC. Like you, my local neurologists had little to offer me that was of any help. Like you, I saw an out-of-town "concussion specialist." He advised me to do less, rest more and meditate. Not only didn't that treatment help; I actually got worse. Life as I knew it was slowly slipping away.
    But, thanks to YOU and your amazing blog, I found UPMC! At the time of my initial appointment, it had been six years since my first concussion and one year past my second concussion. After spending the entire day with the UPMC team of experts, I had hope for the first time in a very long while. Their daunting treatment plan included daily exercises and activities based on "expose and recover" and "exertion therapy" principles. It was a definite struggle that challenged me in many ways, but I was determined to persevere in hope it would ultimately help. After five weeks of spending all day, every day doing my brutal "assignments," I began to see signs of improvement. I am still under UPMC's care and continue to make progress. I have shared information about your blog and about UPMC with many. It is not an exaggeration to say that, because of your blog that lead me to UPMC, I am slowly, but surely getting my life back. I will be forever grateful to you!

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  89. Your blog, in its entirety, is the reason that we were able to recognize what was going on with our 34 year old son, who was functioning but backsliding from a concussion a year ago, then catapulted into a sharp downward spiral after another hit to the head. His medical team gave him all the wrong advice, so we made the effort to find a Sports Medicine Concussion Team that used all the right words in their website. Much red tape and two months later, we have our son back. Otherwise, we were considering the end of his career and independence while we tried to figure out what to do. YOur effort and sharing have made all the difference. Thank you.

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  90. Hello,

    just wanted to say thank you from the bottom of my heart. Thanks to your blog I found UPMC and decided to travel to the other side of the world to get treatment after living in a nightmare for almost 2 years. I would say I am 97-98% recovered to day and I am so greatful and it feels like I have got my life back. UPMC made all the difference for me.

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