I disagree with you about "if you're feeling desperate you should try..."
I apologize for not being clear on this. I do NOT mean to tell anyone what they "should" do. This is why my posts are long and sometimes ambivalent. I only mean to share my story and explain what I would do, given my personal experience, if I were in the same situation again.
For me, the financial cost of treatment is negligible compared to the opportunity cost of being homebound and unable to work. Most people are not so lucky, and if my finances were tighter I would think twice before experimenting with alternative therapies.
I think desperate people are looking for miracle cures and could easily be separated from a lot of their cash
Perhaps I should have used a different adjective. When I said 'desperate', I meant people like myself for whom the traditional 'rest and recuperate' advice has not worked. At some point, I may accept that I will always have my mTBI symptoms and forego further medical treatment, but for now I continue to search for ways to improve my condition.
However, I blanche at the idea that I am looking for a "miracle cure". I'm not expecting to wake up tomorrow and be magically better. I stick to treatment ideas that sound plausible to me; I'm not going around rubbing rabbits' feet.
People like me who go "above and beyond" typical therapies are
separated from a lot of their cash! That's why I joined this board - because I know most people don't have the luxury of experimenting with alternative treatments, and if they do, it's really difficult to compare them and decide between the different options. I want to share information about the therapies I have tried to help people decide whether to (or not to) use them.
One person's story doesn't mean much in the grand scheme of things, but since there's very little data to go off of for these treatments, I think every little bit helps.
Don't you think neurologists want people to get better and would recommend anything that might actually work?
I do think that neurologists want people to get better, but because of the way our medical system is set up, they are not able to recommend anything
actually work. Most of the time, this is a good thing. While our healthcare system isn't perfect, I'm glad it's based in science and not wild theories. Right now, though, I am ready to go past what is proven.
Also, in my perspective, neurologists don't seem to have a very good understanding of the etiology of concussions. They may know a bit more than a layman, but there is still so much that is unknown.
In my case, neurologists have only prescribed drugs to cover up symptoms, never to address the underlying cause. They literally read my chart, pick my most severe symptom (e.g. "trouble focusing" or "headaches") and choose a drug that might help ("I'm prescribing amitriptyline because you say you have headaches, and I've used it before with some of my other headache patients"). This is not my cup of tea. I don't want to use prescription drugs for years on end, so if they are not going to heal my underlying problem, I'm not interested.
My current neurologist is a well-regarded concussion specialist. He has been a bit better than the others, but still does not have much to offer besides "rest". I am ready to go beyond that (though rest is still a cornerstone of my life) and he has blessed that decision, even though he can do little beyond referring me to other specialists (who I have visited).
Re. neurofeedback -
I did not know that it has been shown to cause additional damage; thanks for the insight. I am not trying to make a recommendation for or against it, though I understand if my post came off that way (sorry!). My point is that my experience with it was not great, but that it is impossible for me to say why. I hope my anecdotal experience helps others to make informed decisions, but if there is evidence that it is dangerous, that should obviously be taken into account.
Unfortunately, one of the problems with treatments like neurofeedback and HBOT seems to be that there is a dearth of clinical-grade evidence in general. (At least I have not been able to find much, and right now I don't have the energy to search for any).
Finally (phew!), Mark, I am very curious to learn more about the Central Sleep Apnea you have experienced since your injury. This experience with HBOT has indeed made me wonder if I could have it or something similar, but the possibility has never crossed my mind before. How were you diagnosed? How do you treat it?
Apologies if you have talked about this elsewhere already, if that's the case just let me know and I will dig it up on my own.