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

Has this worked for anyone?

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Unread 04-14-2012, 10:19 AM   #21
EsthersDoll
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Originally Posted by Mark in Idaho View Post
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?
Hi Mark,

I have seen CoQ10 before, but I haven't taken it.

I found it here: http://www.vitacost.com/vitacost-coq...g-120-capsules

I buy a lot of the supplements I take from Vitacost - I think their prices tend to be the best and if you buy $50 worth of items, they ship it for free.

I am thinking of taking just based on your desire to take it - you recommend it?

Thanks!
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Unread 04-28-2012, 11:39 AM   #22
keg2415
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Default HBOT update

I have now had 31 hyperbaric oxygen treatments in the last eight weeks, and I'm back with another update.

My overall condition has continued to improve. Using my previously explained rating scale, my average symptom level this week was 7.5 and my average activity level was 17. Basically, I am doing the same amount of activity as I was a few weeks ago, but with fewer symptoms.

My biggest victory is that I had one day that was nearly symptom-free: I felt great until the early evening, when I got tired and had a mild headache.

However, my recovery has not been perfectly smooth. I spent nearly all of one weekend this month lying in bed after I did a little too much for too many days in a row. Today I am feeling pretty tired, likely for the same reason.

So now the big question: how much is HBOT helping? It's still impossible to say that it's behind my reduction in headaches and fatigue.

There is one thing I directly attribute to it, though: a marked improvement in my sense of well-being. I was never depressed, or even considered myself unhappy, but now I feel an expansive happiness that I never felt before. I notice and feel grateful for really little things, like a sunny day or the chance to talk to a friend. I can sit and do nothing for long stretches of time, just feeling good. I am more aware of my feelings and emotions, and I am less consumed by them. This is especially helpful when I am experiencing PCS pain.

I attribute this to HBOT because of its meditation-like effects. During a treatment, I sit for an hour and a half doing absolutely nothing, and for an hour of that time, I wear a mask that accentuates the sound of my breathing. This biofeedback focuses my mind on my breath in a way that is easy and natural. I might think about other things, but my mind always comes back to my breath. I spend much of the time just counting up and down as I breathe in and out.

I have never really studied meditation, but I see a lot of parallels between my experience and its practice and results. Last week, I listened to an hourlong tape of meditation instruction and practice. Before HBOT, such a tape would have left me thinking, "I don't really get it. What are they talking about? Am I doing this right?". Instead, I thought, "I know exactly what they're trying to say. I regularly experience the mental state they're getting at. The problem is that words don't do it justice."

I have read reports of HBOT clearing up PTSD in veterans diagnosed with both it and PCS. I can see why. Whether it's because of the oxygen or just because of the calming biofeedback, HBOT has definitely improved my mental state - something I wasn't even hoping for when I began treatment.

I'm continuing to have treatments 4-5 times a week. In a few weeks, I'll have reached the 40 treatments used in many research protocols. I hope to have more good news to report then!
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Unread 05-02-2012, 05:27 PM   #23
Colorrado Mike
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I have completed somewhere in the ballpark of 80 sessions of HBOT, and it has done wonders for me. I also do neurofeedback and I'm on Hormone Replacement Therapy as well as nutritional therapy. I have had close to 30 concussions from playing sports and car accidents, and thanks to the therapy I have done, I am about 90% healed.

The HBOT will only work well for you though if you have eliminated inflammation and given your body the "fuel" it needs to heal itself. So, because it is very expensive, before you begin HBOT, make sure you have your thyroid, testosterone, cortisol, growth hormone, food allergies, etc. checked out and treated before beginning the treatments. Usually those who don't do well with HBOT have some type of road block in the way, such as the ones I mentioned above. Btw, those things are actually very common in people who have suffered a brain injury, especially those who had have had multiple brain injuries.

So, I highly recommend HBOT but make sure that you do your due diligence with your body before beginning treatment. And the cool thing is that in some cases, getting your body treated can actually heal your brain injury.
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Unread 05-03-2012, 12:43 PM   #24
EsthersDoll
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Originally Posted by Colorrado Mike View Post
I have completed somewhere in the ballpark of 80 sessions of HBOT, and it has done wonders for me. I also do neurofeedback and I'm on Hormone Replacement Therapy as well as nutritional therapy. I have had close to 30 concussions from playing sports and car accidents, and thanks to the therapy I have done, I am about 90% healed.

The HBOT will only work well for you though if you have eliminated inflammation and given your body the "fuel" it needs to heal itself. So, because it is very expensive, before you begin HBOT, make sure you have your thyroid, testosterone, cortisol, growth hormone, food allergies, etc. checked out and treated before beginning the treatments. Usually those who don't do well with HBOT have some type of road block in the way, such as the ones I mentioned above. Btw, those things are actually very common in people who have suffered a brain injury, especially those who had have had multiple brain injuries.

So, I highly recommend HBOT but make sure that you do your due diligence with your body before beginning treatment. And the cool thing is that in some cases, getting your body treated can actually heal your brain injury.
It's nearly impossible for someone dealing with severe environmental allergies, like me, to reduce inflammation, let alone eliminate it altogether. So, thanks for letting us know that this will not work in instances like that.
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Unread 05-03-2012, 02:56 PM   #25
LindaMartino27
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Default Hyperbaric Oxygen

Hi,

My daughter's injury was in Jan 2008 at age 13. She did oxygen therapy in Nov and Dec 2008. She did 40 treatments - 2x per week. We spent $7,000 on this. I did not see any improvements. The doctor wanted to do another 40 but I just could not justify that money.

It wasn't until March 2010 when we did QEEG guided neuro-feedback with Dr. Walker, a neurologist, in Dallas, TX that we have had significant improvements. She completed 212 treatments in Dec 2011 and she has had no more seizures, no more fatigue, less headaches, less severe headaches and recovers faster. She can tolerate noise for about an hour before she gets a headache. She can now read for 20 minutes 4x per day. So she is still very limited but life is more bearable. She just started vision therapy and that is spiking migraines. It is hard very hard to see her like this she is 18 now. She missed high-school. I wish I had better news.

I'm would like to try acupuncture I've heard several had improvements with that. Dr. Bynum in Dallas, TX had a TBI and she became an acupuncturist because of it. We did meet with her when we were in TX but my daughter doesn't feel comfortable with the needle idea.

Our neuro-psychologist recommends osteopathic treatments - cranial sacral but that really set off a terrible migraine.

Everyone seems to get help from different treatments. Don't give up. I'm not. Magnesium helps her.
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Unread 05-03-2012, 05:17 PM   #26
Concussed Scientist
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Default Hyperbaric Oxygen treatment

I have also tried hyperbaric oxygen treatment 80 one hour treatments at either 1.5 or 2 ATA.

I think that it helped me and there is even some recent evidence from a clinical trial:
http://www.hyperbaricmedicalfoundati...rchJan2012.pdf

I was advised to do the treatment without too much time in between treatments in order to get a cumulative effect, preferably 5 or 6 times a week. I actually only managed 3 or 4 times a week and felt that that was enough for me.

Linda, I see that you were only trying twice a week. This may not have been frequent enough to get the best effects. I do completely accept that different things work for different people, but perhaps your daughter might benefit from trying again, doing the treatments more frequently. I was lucky in being able to get HBOT at a much cheaper rate than you were paying, but I do sympathize with the expense. However, 40 treatments five times a week might be better than 40 treatments twice a week.

I know that you said that you didn't see any benefit. But it is perhaps difficult to know what a 13 year old girl is feeling. Younger people are not always quick to express what they are feeling to their parents, particularly if they have had a brain injury. It would be hard for a parent to know whether or not a treatment was of any use. The communication part, at least, might be better now that your daughter is 18.

All the best to you both.
CS

Quote:
Originally Posted by LindaMartino27 View Post
Hi,

My daughter's injury was in Jan 2008 at age 13. She did oxygen therapy in Nov and Dec 2008. She did 40 treatments - 2x per week. We spent $7,000 on this. I did not see any improvements. The doctor wanted to do another 40 but I just could not justify that money.

It wasn't until March 2010 when we did QEEG guided neuro-feedback with Dr. Walker, a neurologist, in Dallas, TX that we have had significant improvements. She completed 212 treatments in Dec 2011 and she has had no more seizures, no more fatigue, less headaches, less severe headaches and recovers faster. She can tolerate noise for about an hour before she gets a headache. She can now read for 20 minutes 4x per day. So she is still very limited but life is more bearable. She just started vision therapy and that is spiking migraines. It is hard very hard to see her like this she is 18 now. She missed high-school. I wish I had better news.

I'm would like to try acupuncture I've heard several had improvements with that. Dr. Bynum in Dallas, TX had a TBI and she became an acupuncturist because of it. We did meet with her when we were in TX but my daughter doesn't feel comfortable with the needle idea.

Our neuro-psychologist recommends osteopathic treatments - cranial sacral but that really set off a terrible migraine.

Everyone seems to get help from different treatments. Don't give up. I'm not. Magnesium helps her.
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Unread 02-23-2013, 11:36 PM   #27
Trier
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Default Has Worked Incredible Well

Hello!
Yes, hyperbaric oxygen therapy has worked so well for me. I have had four concussions. I have tried many helpful things and many not so helpful things. I never found one that made me feel like myself again. My most recent concussion was in November of 2012. Within two days half of my face was bright red hot and tingly feeling, a terrible headache, super slow speech and motor skills, and I was having a hard time functioning and even thinking.

After getting out of the HBOT, for the first 10 minutes I could see clearly and talk well. Then it all slowed down again. Every session after that, I continuously felt progress for longer periods of time. I am now doing my second set of 40 treatments. Although I am down to my last dollars on my last credit card, I have no doubts as to whether I should be investing in this or not.
Rocky Mountain Hyperbaric Institute in Louisville, CO has a non-profit that can help. They are an incredibly experienced, honest, and caring group of people. These treatments are definitely worth asking anyone you know if they can pitch in some money so that you can get better.
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Unread 02-24-2013, 04:53 AM   #28
Mark in Idaho
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Trier,

Welcome to NeuroTalk. Your experience with HBOT is not common. You are fortunate to be getting good results. Are they doing 1.5 atmospheres " What oxygen percentage ? How long are sessions ?

The VA is doing a study right now. Most studies have been anecdotal and done by HBOT organizations. The most promise is shown with TBI patients who are comatose. It speeds return to consciousness but has not improve long term outcomes.

What other things have you tried that helped and did not help ?

We are always interested in new ideas.

How old are you and how did you get your concussions ?
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59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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Unread 02-25-2013, 01:18 AM   #29
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Quote:
Originally Posted by Mark in Idaho View Post
... 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.
Mark, as a Respiratory Therapist, i would not recommend this idea for you. You have Central Sleep Apnea which means your neuro system "forgets" to breathe, you say it "remembers" to kick in when your oxygen falls. If you had that much oxygen it would not kick in again.

In order for it to work, you'd need to switch to a BiPAP machine, which means it guarantees so many breaths per minute and it pushes in a preset inspiratory air pressure, as well as maintain the expiratory pressure. CPAP is just expiratory pressure, it does not ensure that you take a breath, and it is more used for Obstructive Sleep Apnea (i.e. tongue falls back and obstructs breath efforts).

Neither would an O2 cannula; it would in fact fool your neuro system into not breathing anymore since lack of oxygen is what triggers your breathing. Is your CPAP really adequate and ensures you take enough breaths?? Really not likely, and if I were you I'd get another sleep study titration done at a different place that understands the difference between OSA = CPAP and CSA = BiPAP!

For oxygen, your BiPAP machine can have an adapter for O2 tubing going to the concentrator. For BiPAP, you would need another sleep study to determine the settings you need. For Oxygen to be prescribed along with it, you'd need documentation that your O2 sat falls down while you're sleeping. (At least in order for your insurance to pay for it.)

BEST WISHES Mark -- stay safe!! (P.S. I wonder too if this issue may be causing a lot of your PCS mud days, fatigue, etc... CPAP is just most often not adequate for CSA.) Tell me what your current setting is, just in case you do in fact have a BiPAP machine and not just CPAP, just so we all understand the difference; some people seem to use CPAP as a generic term. Is your setting one number, like 5, or is it two numbers, like 10 / 5 ?
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