Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


advertisement
Reply
 
Thread Tools Display Modes
Old 03-27-2012, 08:38 PM #1
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,418
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,418
15 yr Member
Default

GlassHead,

Be prepared to let the money 'burn' rather than provide a benefit.

Don't risk money you can not afford to risk.

What symptoms are you hoping to get relief from?
__________________
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
EsthersDoll (03-27-2012)
Old 03-28-2012, 04:13 PM #2
GlassHead GlassHead is offline
Junior Member
 
Join Date: Sep 2010
Posts: 72
10 yr Member
GlassHead GlassHead is offline
Junior Member
 
Join Date: Sep 2010
Posts: 72
10 yr Member
Default

Quote:
Originally Posted by Mark in Idaho View Post
GlassHead,

Be prepared to let the money 'burn' rather than provide a benefit.

Don't risk money you can not afford to risk.

What symptoms are you hoping to get relief from?
I canīt afford the treatment anyway so itīs not really an option

I would like to regain my ability to concentrate and as far as i know, no other therapy helps in that regard.

Maybe QEEG neurofeedback can be used instead of the HBOT.
GlassHead is offline   Reply With QuoteReply With Quote
Old 03-28-2012, 09:36 PM #3
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,418
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,418
15 yr Member
Default

The best way you can relearn to concentrate starts at a very basic level. The first thing you need to do is reduce and/or eliminate excess stimuli. I wrote about this on another thread. I'll see if I can find the discussion.
__________________
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
Old 03-29-2012, 02:10 PM #4
keg2415 keg2415 is offline
Junior Member
 
Join Date: Mar 2012
Posts: 8
10 yr Member
keg2415 keg2415 is offline
Junior Member
 
Join Date: Mar 2012
Posts: 8
10 yr Member
Default It's been working for me

See my painfully detailed response in the thread 'Has anyone tried Hyperbaric Oxygen Therapy?': neurotalk.psychcentral.com/thread164251.html

Sorry to post in an old, dormant thread rather than in this one - I didn't realize that this new thread existed.

Bottom line is that I have had a good experience.
keg2415 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Concussed Scientist (04-29-2012)
Old 03-29-2012, 02:27 PM #5
keg2415 keg2415 is offline
Junior Member
 
Join Date: Mar 2012
Posts: 8
10 yr Member
keg2415 keg2415 is offline
Junior Member
 
Join Date: Mar 2012
Posts: 8
10 yr Member
Default qEEG Biofeedback

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.
keg2415 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brain patch (02-24-2013)
Old 04-01-2012, 07:06 PM #6
GlassHead GlassHead is offline
Junior Member
 
Join Date: Sep 2010
Posts: 72
10 yr Member
GlassHead GlassHead is offline
Junior Member
 
Join Date: Sep 2010
Posts: 72
10 yr Member
Default

Quote:
Originally Posted by keg2415 View Post
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.
GlassHead is offline   Reply With QuoteReply With Quote
Old 04-01-2012, 10:13 PM #7
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,418
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,418
15 yr Member
Default

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 in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
Old 04-02-2012, 08:55 AM #8
keg2415 keg2415 is offline
Junior Member
 
Join Date: Mar 2012
Posts: 8
10 yr Member
keg2415 keg2415 is offline
Junior Member
 
Join Date: Mar 2012
Posts: 8
10 yr Member
Default HBOT Experience

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.
keg2415 is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
TS and OCD...What worked for us Michelle M Tourette Syndrome 4 01-05-2012 06:07 PM
I am getting a little worked up.... bizi Bipolar Disorder 144 09-27-2011 09:11 PM
all worked up.... bizi Bipolar Disorder 36 08-21-2011 01:40 PM
Do you work or have worked with PN? drwk Peripheral Neuropathy 26 08-09-2011 04:51 PM
How has it worked out for you? kalamity_jane Traumatic Brain Injury and Post Concussion Syndrome 0 09-24-2008 03:21 AM


All times are GMT -5. The time now is 01:24 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.