Well with the plummeting (relatively) cost of sequencing and the advent of CRISPR gene editing technology, perhaps someday they'll have an effective treatment. That someday is a ways off though, here's to hoping we'll all be much better by then!

The problem is even if they fully identify the genetic issue, monoclonal antibody therapy costs a small fortune. Large market products (MS and other autoimmune conditions) can cost $1200 to $8000 per month and more. They need to be administered within the first 12 hours or less. No medical funding system will support treating every concussion with such an expensive treatment.

I don't know much about monoclonal antibody therapy, but CRISPR is a new genetic technology that is in the process of revolutionizing research, both basic science and disease genetics research. It's a biomolecular system that can target with exceptional precision any DNA sequence and edit it. We're a far cry (both technologically and ethically) from using it on adults, but maybe sometime in the future.

http://www.scientificamerican.com/ar...use-in-humans/

Hi MicroMan,

Very sorry to hear the immersion program didn't work for you. I'm the guy who wrote the blog at the top of this thread, and I totally agree that what worked for me, won't necessarily work for everyone. Every injury is different. My hopes and prayers are with you! I know how bad it can be.

-Martin

Danny,

Thanks for reading my blog. I love your comments. They're right on the money for how I recovered (rest first, then expose and recover, etc.). The vitamins did nothing noticeable for me either.

For screen time, the big thing for me was finding an ophthalmologist with a clue, lowering my glasses prescription, giving my nerves time to heal (6-7 months), and using the string and beads (brock string) for my severe convergence insufficiency. And even with all of that, my new normal is that I have to wear computer eye glasses and I never had to before.

-Martin

Doozer,

Screen time was just the worst for me originally. For about 6 weeks or so, I had to rest my eyes every other hour for a full hour. It's depressing and just really hard to deal with.

My opthalmologist (Dr. Lowell Singman) said my nerves were yanked bank and forth and stretched during my roll over car accident because our brains are sort of floating but they are wired to our eyeballs, along with a bunch of muscles. So during the accident while my brain was bouncing around in my head (so to speak) it was yanking on the muscles and nerves.

Anyway, his solution for my vision problem had several parts. First, I had this terrible headache and pain that radiated from behind my right ear over my head and into my right eye. This was actually occipital neuralgia and I had to go to a pain doctor for that. Luckily, I was able to get better with a few treatments (a steroid and pain med injection couple with similar topical cream). Controlling the pain was crucial. Then he lowered my eye glass prescription so that I would put less pressure on my muscles. Essentially, things were blurry for a while and I wasn't even squinting to try to see things clearly. I just got used to things being blurry. Then I started a home program for my convergence insufficiency. The brock string is what worked best. So all of this plus a lot of time is what helped me get back to normal. I wound up having a new eyeglass prescription every 6 weeks until I was back to normal. I guess this was happening as my eyes were healing. The glasses would just stop working or start giving me a headache. The changes in prescription were small and drove the optometrists crazy, but they made a big difference for me. And then one day, the prescription was about what I had before.

Anyway, that worked for me, but everybody' injury is different. Stay strong!

Hi Mark,

The guys at UPMC have a solution for the anxiety. If they think that's a problem, they put you on Zoloft so you can take the anxiety out of the equation. I was on it for 6 months and I'm sure it helped, though for me by the time I got there the only issue I had not tackled was my very subtle vestibular problems, so I might not have needed it.

My vestibular problems, by the way, were not at all apparent to me and they had been missed by every other doctor. The same was true for my lingering convergence insufficiency. Solving those two things took me from 50% better to 100% better (new normal). And that's why it was a mystery to me and other doctors for so long as to why I wasn't fully recovering.

Anyway, looking at it now in hindsight, I had five or six serious injuries at the same time, all of which were hard to diagnose and treat. Each injury was not healed until I found the right doctor. This meant trial and error on my part (trying different doctors) and not taking every doctor's word as gospel unless he or she actually fixed the problem. And I wasn't fully better until all of the injuries were addressed.

Microman,

One other thing comes to mind here. For me, expose and recover worked, but if I had tried it at the beginning or before I had other problems solved, I think it would have been a disaster. I tried the "buck up little camper" approach early on and each time I wound up in a worst state and each of those experiences made it more likely for me to stay holed up in my bunker (bedroom) with the lights out.

But after I had solved my headache problem (occipital neuralgia) and my eye problems, which took about four months and a trip to Johns Hopkins, I think I was then ready for expose and recover because my remaining symptoms (though I didn't know it at the time) were mostly vestibular and psychological (mild PTSD?). And those respond well to expose and recover. In fact, I think for those symptoms, expose and recover is the answer.

Anyway, those are my 2 cents...

Best of luck on your road to recovery!

Mrico:

Could you explain what you mean by your convergence insufficiency and vestibular problems were not evident to you? How ere they diagnosed (specifically)? What symptoms were you facing before they were diagnosed? What were the treatments?

Thanks
InjuredButRecoverin'

Hi injuredbutrecoverin,

For convergence insufficiency, I had gone through a computer-based therapy and thought I had taken care of that. But when I went to the UPMC concussion clinic and was re-evaluated, I still had trouble. They gave me the bead and string system (brock string) to do at home and that worked much better. A month later on my follow up, they didn't detect any CI and I was feeling much better.

As for the vestibular problems, I never felt dizzy or had motion sickness. In fact, I was tested at Johns Hopkins by a great neurologist (who did not specialize in concussions) and he gave me a clean bill of health in terms of my vestibular function. But then at the UPMC concussion clinic, where all they do is concussions, a physical therapist and a vestibular therapist were both able to make me dizzy in certain weird situations, like during different step aerobics moves, walking backwards, and shaking my head side to side while looking at the center of a checkerboard image on the wall.

So it turns out, I did have vestibular problems, so they gave me an at-home program to follow in which I had to keep making myself dizzy twice a day. Eventually, my brain re-wired itself and those things didn't make me dizzy anymore and that is the main thing that helped my last major symptom clear, which was fatigue.

-Martin