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 again) Here 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.

• Buffalo Protocol Article 1 
• Buffalo Protocol Article 2 
• Buffalo Protocol Article 3
• Buffalo Protocol Article 4 
• Buffalo Protocol Article 5
• Google Search Results

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!