Hi Martin,
Could you please explain what you mean by you still had CI? When they measured your convergence after the computer program you were able to converge at nearby distances but the folks at UPMC did the same test and found you could not? If they did a different examination, how was it different?

Regarding vestibular stuff: what home exercises did they prescribe to you? I understand the looking at a letter and shaking your head to restore your vestibulo-ocular reflex. What else did they do to evaluate you and treat you?

I'm trying to determine if the evaluations I have undergone are sufficient or if it's worth a trip to UPMC.

Thanks

Hi injuredbutrecoverin,

The computer program I was on for my convergence insufficiency was an at-home program. I went through the full thing and "passed it" but I was never evaluated by a doctor again until I went to UPMC. They didn't use a computer, they just stuck a pen in front of my face. They also moved it around and did fast motions (if I remember correctly) and that's how they decided my convergence insufficiency was still not good enough. Also keep in mind that although I don't remember the number, it was originally really bad. So after the computer program I was much better, but I was still not really fully back to normal. So I noticed a big improvement and thought I was better, but I wasn't.

As for the vestibular stuff, it was a 1 hour evaluation with a physical therapist and a 1 hour evaluation with a vestibular therapist, so it's hard to remember everything they did.

For physical therapy, it was a series of exercises that involved a lot of going up and down and turning my head from side to side and walking in different directions. Then I was put on two different cardio machines. Each step of the way they would ask how I felt (dizzy? rubber band around the head feeling? nauseous? etc.). I wish I could be more specific.

The home exercise routine was 2 different kinds of step aerobics, one in which I was just going up and down and another where each time I had to touch one side of the floor and then the other. There were also lunges, Russian twists, running, and probably a few more I can't remember.

As for the vestibular, I was checked out by 2 people and I really can't recall everything they did. They checked my convergence insufficiency. And they did the test with the checkerboard on the wall. I had to do the brock string at home and the checkerboard. There were also some other things I did while lying on the floor, but I really can't remember how that went at the moment.

I'll have a look around and see if I still have the documents they sent me home with and post the information if I find it.

Hope this helps!
Martin

Hi Martin,
Thanks very much for responding. if you do find it, posting it would be a great help. It sounds somewhat similar to the protocol I underwent but definitely not exactly the same. I just spoke with them today and am going to see if I can make it over there but there are always questions of logistics.

Again, thanks very much for your help.

Hi Martin,
I know you have covered this on your blog. Once you were cleared from Occipital Neuralgia, Did mental fatigue became the only symptom as a result from convergence insufficiency and vestibular problems? Or did you experienced your occasional tension headache? or other, etc.?
I believe I have the same problem, and they have not been properly diagnosed. Thank you for helping us!

any chance you can explain that buffalo protocol, or give me a better understanding, it really is alot for me to read at this time,

my understanding exercising about 20 minutes, monitoring your heart rate to a level where you feel somewhat uncomforatable with your symptoms ?

The Buffalo Protocol does not focus on time. It tracks heart rate. When you find your symptoms threshold, you stop exercising. Next time, you exercise to a heart rate that is 10% lower than threshold. Stay at this lower heart rate for a couple weeks before increasing your heart rate target.

Hi Javier,

Once the occipital neuralgia was gone and my vision was back to normal I could half way function and returned to work part time. I was actually in my office resting every other hour. And yes, I'd say mental fatigue was the main symptom that remained. What I was told is that it was caused by lingering anxiety from mild PTSD and my vestibular problems which made my brain feel like I was always falling a bit even though I did not notice any balance issues.

I don't think I had much in the way of headaches, but it took a while for the occipital neuralgia to fully resolve - probably 4-5 months before I was totally off of the pain cream I was applying to the affected areas (where it hurt on my head) and my regular dosage of etodolac and Tylenol. After that I don't think I had headaches associated with the concussion. And the pain cream that I got at Hopkins was diagnostic. Once I applied it, the headache went away miraculously - for a bit. That told them that it was very likely occipital neuralgia and that the injections would probably help.

Hope this helps!

Hi Sohitd,

Here is the summary from my blog post. I've shortened it as much as I can. And keep in mind, I didn't start it until almost 3 months after my concussion, after my vision had started getting better and my headaches were under control and on the mend.

____________

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.

5. The recommendation is to re-evaluate yourself after about two weeks, find your new baseline, and set a new target BPM to get you out of your comfort zone.

6. 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). In retrospect, the big jumps suggested by Dr. Leddy would probably be a better way to go - more like jumping from 120 right to 130 or 140, etc. That would have really gotten me out of my comfort zone and made me feel bad, but possibly would have been more effective. I can't say for sure.

7. After about 3 months, I made it 80% of my max suggested heart rate (BPM). Dr. Leddy suggested I go to 90% of my baseline rather than 80% since I had not fully recovered. I was 40 at the time, so it was 180 BPM * 90% = 162 BPM.

8. By January, 2015 I was at 162 BPM. 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.

9. In the end, doing the Buffalo protocol on my own without direct supervision from Dr. Leddy or anyone trained in the Buffalo protocol, I wasn't able to fully get better. But it did help me a lot and I did see progress, which is really helpful because otherwise, things can seem hopeless.

10. Once I decided I had gotten all I could out of the Buffalo protocol, I started looking for other options and that's when I found the UPMC concussion clinic and that is where I got fully healed.

Hope this helps on your road to recovery!
Martin

thank you appreciate that!,

Thank you Martin!