Also, GlassHead - I tried qEEG feedback about a year ago. As with HBOT, it was a bit difficult to tell how effective it was, but I have liked HBOT much better. With qEEG, I did feel pretty good at the end of the month or so that I did it (3x/week) but each session made me feel tired and foggy.

The overall improvement could be due to the qEEG biofeedback or due to time. As I said in my post on the other thread, I tend to improve slowly (over the course of many months) unless I experience a setback.

The worsening of symptoms after each session could be because the session was making my injury worse, or because my brain was tired but rebuilding (like muscle soreness after a workout). Since they use visual or audio stimulation to provide the feedback - I used a video-game-like interface, watched movies, and listened to beeps at various points in my therapy - my brain was really irritated even though it might have been learning new, better patterns.

Eventually I stopped going because I didn't like feeling crummy after each session.

Also, I believe qEEG was even more expensive than HBOT, but I don't remember exactly off the top of my head.

Hope this helps, good luck if you do try it.

Thx for the feedback, glad you had good experiences with the treatments. I will think about these treatment options as the next step in my recovery plan.
Might be years before I can afford them though.

keg,

It would be great if you could elaborate about your experience with HBOT.

How many sessions? How often?

What improvements did you notice?

How far into your recovery did you start the HBOT?

How much did you have to pay?

Your qEEG neurofeedback sessions were likely too long. Shorter sessions more frequently might have been better. Exercising the brain to fatigue would be counter productive. Most neurofeedback is designed for ADD/ADHD where the longer sessions are not a cause of fatigue.

Was it the kind of neurofeedback where you tried to modify the wave forms as a sort of video game?

Mark,

I posted many details in the thread "Has Anyone Tried Hyperbaric Oxygen Therapy?". I'm reposting my entire response below. It's quite lengthy, but you can scroll down to the bottom for a short summary.

I will agree that my neurofeedback sessions were likely too long. You are right with your guesses that the office was probably ADD/ADHD-focused and that the feedback was delivered in the form of a video game. We did try multiple versions of feedback, including:

• straight up video game (a la Asteroids) - you score more points if you make the correct wave patterns
• listening to beeps - the beeps get louder and steadier if you make the correct wave pattern [this one was the WORST - not recommended for MTBI patients!]
• watching a movie - playback stops if you make the wrong wave patterns
• reading on the internet - screen goes black if you make the wrong wave patterns

Ultimately, all of them made me feel less than great. However, this doesn't mean neurofeedback itself is useless; it just means that I wasn't using it correctly. Some of the problems could have been:

• I was using feedback mechanisms that were too stimulating
• I was doing it for too long
• We were targeting the wrong areas of my brain (unlike in ADHD, there is no specific area that is responsible for MTBI symptoms)
• We were manipulating the wrong brain waves (again, I believe is no broad agreement on which waves - e.g. alpha, beta, delta - are implicated in MTBI symptoms, plus every injury is unique)
• The office environment itself made me feel bad (many fluorescent lights), and this negated the treatment's positive effects

If you are desperate for help, as I was, I would not write off qEEG neurofeedback, though I would seek out a practitioner who works with brain injury patients. I would try HBOT first, though.

I disagree with you about "if you're feeling desperate you should try..."

I think desperate people are looking for miracle cures and could easily be separated from a lot of their cash with these very expensive healing modalities - which are not backed up by Neurologists. Don't you think neurologists want people to get better and would recommend anything that might actually work?

In addition, the neurofeedback has been known to cause additional damage and even seizures in people healing from mild traumatic brain injuries. If it does work for some people then they got lucky - very lucky. There is no way to see the actually damage inside one's brain who is recovering from an mTBI, guessing which areas were damaged isn't good enough. It might be interesting to see how it works after diffuse tensor imaging is confirmed as a reliable method to see what's going on inside a person's brain after an mTBI and then to use neurofeedback - but I wouldn't risk further harm for a maybe that costs thousands of dollars.

@EsthersDoll

Research done on QEEG and its effectiveness in diagnosing/treating PCS has been confirmed in several studies done in this area of research. Although I can not say anything about the quality of these studies or if they were financially motivated.

Many of these studies and their findings have been dealt with in this article:

http://www.ncbi.nlm.nih.gov/pubmed/15493535 [Abstract]

http://sydney-neurofeedback.com.au/d...ff,%202004.pdf [Full article]

I think the main problem with this therapy is the large amount of stimulation in the therapy session and probably also the lack of PCS knowledge in many of the practitioners.

EsthersDoll,

I wonder if you are confusing neurofeedback with neurotherapy such as LENS and ROSHI. The non-volitional neurotherapy systems do have a problem with seizures and other adverse events.

The neurofeedback that uses volitional therapy has a very good and safe record. Its goal is to teach the client to get better control of their mind and body. Think of bio-feedback for control of Blood Pressure and Pulse. This neurofeedback asks for the client to make thought changes to change the wave-forms to a targeted wave form. It can be highly effective with ADD/ADHD.

With PCS, it can help the client develop under-developed skills to use to overcome some PCS symptoms. Sometimes, the PCS client has allowed some brain systems to get lazy. This can help strengthen those lazy skills.

Unfortunately, there are many therapists who have tried to put non-volitional neurotherapy under the same name as volitional neurofeedback. They do this to get the treatments included in the range of treatments approved for their therapy specialty. I read the online minutes of a large eastern US therapists association where this was discussed as a primary goal.

But, in keg's situation, it was likely used well past the fatigue point of his brain.

His comments regarding HBOT lead me to believe that he is not necessarily getting true healing. Rather, he is getting a booster shot of oxygenated brain cells and some very disciplined rest, relaxation and breathing. This makes me believe that keg is not getting good brain oxygenation during his normal sleep cycles. This is a big problem for me as I have struggled with Central Sleep Apnea since my injury in 2001.

But, what many of us would pay to have those great days of oxygenated and alive brains. I have wondered about trying to get a prescription for an oxygen concentrator and nasal cannula to breath more concentrated oxygen when I sleep. Dreaming with a fully oxygenated brain is so nice.

Hi EsthersDoll,

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.

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.

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 that might 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.

Thank you all for your replies!

I certainly may have confused a few of the modalities, but only because some of the practitioners seem to have touted what they do as the same when it may in fact be different.

I will do some more reading in these areas.

Thanks again!