NeuroTalk Support Groups - Has this worked for anyone?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Traumatic Brain Injury and Post Concussion Syndrome (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/)

- - Has this worked for anyone? (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/167102-has-this-worked-for-anyone.html)

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.

Quote:

Hi everyone,

I have had post-concussion syndrome for over two years and began hyperbaric oxygen therapy just under a month ago. I have never posted here before, but I have had a good experience with HBOT and wanted to share my observations with others.

I was motivated to try HBOT after I took a vacation at high altitude and noticed that my symptoms got worse and worse the week I was there. Since many of them mimic altitude sickness (e.g. dizziness, nausea, headaches) I decided to try taking compressed oxygen, which stores at our resort were touting for that condition. To my extreme surprise, the oxygen made me feel a little bit better.

Heartened by this experience, I began researching HBOT and discovered that the U.S. military is currently conducting Phase II clinical trials of the use of HBOT for PCS:

[my links have been moderated - use a search engine to find clinical trials NCT01306968, NCT01220713, and NCT01105962]

No data are yet available from these studies, but I was impressed that the treatment is being explored in Phase II trials. Phase II studies typically involve 100-300 people and are done after pilot or Phase I studies suggest the treatment may be useful. There have already been anecdotal reports of HBOT helping PCS patients. Search for

I decided I wanted to give HBOT a try. Fortunately, my neurologist was receptive (something that really surprised me, as he is typically very conservative) although he admitted there are not yet good data on it. However, it would have been easy for me to get treatment from an independent center without his approval - the place I am using did not even require a referral from a doctor.

Most places that take insurance will not accept PCS as patients because the treatment is off-label. Even when I offered to pay myself, none of the hospitals or wound care centers in my area would take me. Still, there are independent HBOT centers that will treat pretty much anyone. I am receiving HBOT at a mom-and-pop operation that charges me $150 per treatment.

I have had 12 treatments over the last 3.5 weeks, going 3-4 times each week. I would like to go more frequently (the protocol in most of the studies is to go every day), but my schedule has not permitted it. I am currently receiving treatment at 1.5 atm, although the tech would like to bump it up to 1.75 atm soon. Each treatment consists of one hour on oxygen, plus 10-15 minutes at the beginning and the end to pressurize and depressurize the chamber.

So far, I have made steady - though not spectacular - progress. Before I began treatment, I was feeling so bad I could barely leave home or take care of myself. I would not have been able to write this post because it was difficult to focus. I struggled even to make myself meals. Now, I have periods where I feel well enough to work on my computer (usually <1 hour at a time), take walks outside, and do light housework.

It is a bit difficult to tell how much of this improvement I should attribute to the oxygen. For the past two years, I have cycled between feeling okay and feeling terrible. Typically, I make slow, almost imperceptible improvement from week to week, but this progress is easily derailed by the smallest stressors - bumping my head lightly, being in a loud/noisy place for too long, getting my heart rate up for any length of time, even just dealing with a stressful situation. After one of these setbacks, it takes me months just to barely function again, but I do improve. So it's hard to say how much of my recent improvement is thanks to HBOT and how much is thanks to time.

Still, I do think HBOT helps. The sessions clear my brain fog and give me energy in a way that just lying down and resting does not. Typically, at the beginning of a session I will be a bit drowsy and want to close my eyes. Halfway through, I feel much more alert and cannot keep my eyes closed. My mind becomes more active, though I try to focus on just breathing in and out. I have more energy in the afternoons after my treatment than in the mornings before I go.

These effects can be short-lived depending on how ambitious I am with my activities after treatment. Even just riding in a car to and from the center can wipe out the effects, especially if it is sunny out. I wear sunglasses and try to avoid looking out the window.

Sometimes I feel dizzy when I first exit the chamber, especially if I have taken a few days off. I try to sit up towards the end of my sessions to avoid this. Dizziness has become less of a problem for me over time.

The first time I went, I actually felt terrible afterwards and had to sleep for the rest of the day. I haven't had that problem since.

In addition to the acute effects of the oxygen, which I do think are real, HBOT could also be helping me in other ways.

Part of the improvement could be due to the placebo effect - I have tried numerous drugs and other therapies, but this is the only thing that I really believe has worked. It has been disheartening to have a condition with no proven cures, and it is great to feel like I am actually doing something to get better. Even if 100% of my improvement were due to the placebo effect, I would continue going. At the end of the day all I care about is that I get better, and if the placebo effect helps me do it faster, then I am all for it!

Part of the improvement could also be from the fact that HBOT forces me to do absolutely nothing for about 1.5 hours each day. Most of the time, it is hard for me to have the discipline to do this unless I am actually sleepy and want to nap.

Additionally, while I am on oxygen (1 hour) the breathing apparatus makes noise when I inhale and exhale, making it difficult to focus on anything other than my breath. Since focusing on the breath is a tenet of many meditation practices, I wonder if this experience is teaching me a mild form of meditation. Outside of HBOT, I am now able to relax and focus on my breath for much longer periods than I ever could before. This helps me rest and recover more quickly when I am feeling bad.

So, to summarize:
- HBOT 3-4x/week for 1 hr @ 1.5 atm. 12 treatments so far.
- Costs me $150/treatment
- Acute improvement during the treatment itself: feel more energetic and focused
- Occasional dizziness on exit from chamber; has decreased with time
- Long-term improvement may or may not be due to HBOT
- Even if HBOT itself is not helping, placebo effect and learning to relax are positive side effects

I am happy to answer any questions that anyone has about my experience. I consider myself fortunate to have the means to experiment with this while it is still unproven, and I want to help others who are deciding whether or not it is worth it to spend the money.

Right now, my recommendation would be to try HBOT if doing so will not create new sources of stress for you, since these can wipe out your progress. Try to go as often as possible and don't expect any miracles. The tech at my center says it often takes 10 sessions before people start noticing any changes.

I hope to update this thread after I have more treatments with information about my progress, or lack thereof. Best of luck to everyone!

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,

Quote:

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.

Quote:

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.

Quote:

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 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! :)

For me, my Central Sleep Apnea seems to be tied to neck position. If I sleep with my head forward or leaning to the left, after a while, I will go through cycles of no breathing that last 2 to 3 minutes before my brain recognized the lack of oxygen and starts me breathing again. A couple minutes later, the cycles repeats.

My wife notices this and can connect it to a need for me to nap more during that day. The ability to fall asleep/nap easily during the day is a common symptom of sleep apnea.

We all were envious of my father's ability to take short naps during the day and wake up refreshed after 15 minutes. I believe this ability was due to his apnea. At night, his breathing would slow, getting quieter until it stopped completely. After 2 minutes or so, he would start huffing and puffing until he resumed normal breathing and repeat the cycle.

And keg, If you have sleep apnea, HBOT would provide quite an invigorating oxygenation to your brain that would decrease as you O2 levels returned to normal then decreased after the next apnea episode. Oxygen debt leaves the brain in a depleted state until oxygen levels can brought back to normal.

There are some researchers who believe concussion damages the capillaries that are where oxygen transfers to the neurons, etc.

Hyperbaric Oxygen Update

Hi everyone,

I am back with another update about my hyperbaric oxygen therapy. I have now undergone 23 60-minute treatments in the last 5 weeks. My first 12 treatments were at 1.5 ATA, and the last 11 have been at 1.75 ATA.

The negative side effects I experienced after early HBOT treatments have disappeared. I continue to feel better (mainly, more alert and focused, and less headache-y) during and immediately after HBOT sessions. When I increased from 1.5 to 1.75 ATA, I noticed that this good feeling started earlier in my session, at around 15-20 minutes in rather than 30-40 minutes in.

My condition has continued to improve slowly and steadily. I can now do significantly more activity, and have significantly fewer symptoms.

Below are some numbers that help to communicate my improvement. I track both daily activity and daily symptoms in a spreadsheet on scales from 0 to 25.

For activity,
0 = lying in bed vegetating,
25 = a busy day with a light workout or a stressful situation. What most people would consider "normal".

For symptoms,
0 = no symptoms,
25 = in such agony I cannot move or open my eyes (fortunately, I've never had a day like this).

My current goal is to sustain an activity level of 20 with zero symptoms.

The week before I began HBOT, my average activity level was 11 and my average symptom level was 16. I spent my days lounging around my apartment, reading, napping, and resting. It was a big accomplishment when I walked around the corner to pick up some takeout. I had continual brain fog, was very tired, and occasionally felt nauseous.

The week I first reported on my treatment (March 29), my average activity level increased to 14 and my average symptom level decreased to 12. I still spent most of my days lounging around and napping, but I was able to work for a few hours each day, and I had a couple of days that were quite high-energy (traveling, a friend's wedding, etc.). I still had frequent brain fog and fatigue, but it was no longer constant. The nausea disappeared. Unfortunately, I did start experiencing achy and stiff limbs when I woke up in the morning, an old symptom I hadn't had in a while. My symptoms were erratic: I'd have one day when I felt great, followed by two days of feeling terrible.

This week, my average activity level increased again, to 17, and my average symptom level decreased to 9.5. My symptoms have been much less erratic, and I have really enjoyed my increased energy levels. My sleep has improved a bit and my achiness has been decreasing. On my best day this week, I got up early, walked a half mile to the grocery store, came home, walked a mile to the library, where I spent a couple of hours finishing up my taxes and chatted with a friend I ran into, walked home, cooked lunch, talked on the phone, walked a mile to the mall and back, and stopped at a restaurant for dinner. I did take a nap in the afternoon because of a headache, but for me, this activity level was nothing short of amazing. I'm trying not to have too many days like this, because my main focus is on symptom reduction, and for that I want to rest as much as possible.

So is this improvement due to HBOT? It's really tough to say. As I mentioned before, I usually make slow progress given time and rest, and I don't know if I'm improving more rapidly right now than I did after previous PCS flares.

Additionally, I see one doctor who is both an MD and an acupuncturist. When I saw him last week and described how helpful HBOT has been for me, he gave me some supplements to increase my blood oxygenation levels and cellular energy production at other times of day, too (the main things he gave me were CoQ10, pantothenic acid, and something called ChlorOxygen - chlorophyll in a capsule!). These supplements seem to have also helped my symptoms stabilize at a lower level. Unfortunately, they also make it more difficult to draw conclusions about HBOT.

My neurologist has been pleased with my progress and has told me to "keep doing whatever you're doing". I'm inclined to agree. My plan is to continue HBOT at least until I get to 40 sessions, and possibly for longer. I do not want to oversell the benefits of this treatment, as it's extremely unclear how much of my improvement I should attribute to it, but it seems to be working for me and I want to maximize my chances of continuing to progress.

Again, I hope this is helpful for anyone considering HBOT, and I'm happy to answer questions.

Pantothenic acid is just another name for Vitamin B-5. It is included in a B-50 or B-100 complex. CoQ10 is something I'd take if it was not so expensive.

Does anybody else take CoQ10?