NeuroTalk Support Groups - For those who are interested in treating their brain injuries

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/)

- - For those who are interested in treating their brain injuries (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/169109-treating-brain-injuries.html)

Your experience sounds about normal compared to what others have experienced with similar treatments/therapies and dietary changes.

The LENS neurotherapy has been damaging to some and anecdotally beneficial to a few.

Your DO uses a different treatment than most have mentioned. All DO's get extensively trained in CST or OMT (Osteopathic Manipulative Therapy.) The weekenders usually are massage therapists and other non-doctors. OMT taught by some DO schools has less emphasis in the skull plates. It is more of a spinal manipulative therapy. OMT has been helpful to some.

The HBOT has a mixed record. It appears the circulatory benefits are the most important. The routine oxygenated periods of relaxation can be a big benefit. It will be great when HBOT is researched by an independent organization with a double-blind method with pre and post NeuroPsych Assessment. The VA study was very small and did not include any variety of injury.

The nutritional, dietary and hormonal therapies are commonly beneficial. I haven't heard as much about the gluten issues but some here have found it helpful.

I have a gut issue that is related to spine inflammation problems. I wonder how many other mTBI gut issues are related to the spine.

Quote:

Originally Posted by Colorrado Mike (Post 875843)

Mark in Idaho and Fenton,

Well, the phrasing was meant to be a bit funny, so I'm glad you guys got a kick out of it :).

Here is the list of what worked and what didn't work, but I'll have to elaborate on them next week as I'm in the middle of finals week right now...:eek:

Worked: Neurofeedback, HBOT, Balance Therapy, Hormone Therapy, Nurtional/Vitamin Therapy, Cranial Sacral Therapy from and D.O., Upper Cervical Chiropractic Therapy.

Didn't Work: Chiropractic Neurology, Accupuncture, Cognitive Behavioral Therapy, Anti Depressants, Stimulants, sleep therapy.

Women's International Pharmacy is a very good company. I'm glad that you are aware of them. As a matter of fact, I have gotten a lot of referrals for good doctors from them.

EsthersDoll,

Yes, I'm sure there are probably a million and one anti aging docs in LA. If you're serious about getting one though, I do know of one who specializes in TBI Post Hormone Deficiency Syndrome. The only caveat to these guys is that they don't take insurance because they have to spend somewhere around 3 hours with you on the first visit and an hour with you on each subsequent visit and insurance companies won't pay for their time with you beyond 30 minutes, I believe. However, if you do have insurance, you can usually get reimbursed through your out of network coverage, which is what I did. They will also sometimes put you on a payment plan if you are coming to them because of a disability.

Also, if you don't mind sharing, I'd be happy to look at your hormones and tell you if you need to seek out further help for them. The lab ranges are mostly outdated and need to be updated but, unfortunately, most docs aren't aware of this. For example, I had my testosterone levels tested and it was at 350, which fell within the normal range of 300-1000. So, I had 8 doctors tell me it was okay. I got to a good anti aging doc and the first thing he told me was that my levels were good....for an 85 year old man - I'm 34. So, as you can see, the levels are antiquated.

Thank you so much for the offer! I will see my PCP in the next couple of weeks, I will ask her for a copy of my hormone levels. And based on what the results are, I would definitely appreciate a recommendation!

Whether I actually am able to follow through with treatment will be based on how much it actually costs and what my boyfriend and family says - they are supporting me financially until I can get back on my feet. And I owe them a lot of money right now... generally, they've been very supportive of out of pocket expenses I've wanted though.

I've paid for a lot of treatments out of pocket at this point. I've been recovering from one complicated concussion for more than 21 months... And I'm doing much better than I was a year ago and I've been given an excellent prognosis. But I'm still always looking to see if I can find a treatment that will help me to recover faster and/or better.

What has definitely helped me recover so far: PCP, Second Neurologist, Spinal Tap!, Second Speech Therapist, Physical Therapist, supplements, vitamins and very good nutrition, Second cognitive behavioral therapist, time, the Bowen Technique, chiropractor, returning to work (even though it's just been part time so far), support of boyfriend/friends/family/co-workers, energy healing (Reiki, Healing Touch, Re Hu Tek, etc.), discovering a new, post-morbid, wheat allergy and eliminating wheat from my diet, meeting other people dealing with TBI recovery at neurotalk :)

What helped me to a much lesser degree: acupuncture, massage, First Cognitive Behavioral Therapist, narcotics prescribed to me to deal with severe pain

What didn't help me at all: First Neurologist, First Speech Therapist, misunderstandings about mTBI from boyfriend/family/friends, overdoing it/pushing myself too far, expecting myself to be able to accomplish what I could before the injury, physically withdrawing from narcotics after severe pain was resolved, muscle relaxers and some other medications

What made me worse: anti-depressants, Topomax

What I'm considering trying in the next couple of months: Vision Therapy, and possibly an anti-aging Doctor

And I know that exercise will help me too. So, I've been attempting to add a light, exercise routine to my day for months... I was taking regular walks daily until I started working again. My job is physically demanding and as I've gotten better, I've been able to do more physically at work, but not much else beyond that so far. Anytime I try, I get terribly dizzy and can experience small set backs, so I've not pushed the issue too much.

Colorado Mike, Nice to hear of your recovery. Thank you for sharing and offering to answer questions.

Do you have headaches? How severe? When/ Did they go completely away? Did any of your treatments mentioned above help them? Or were you more focused on recovering from cognitive symptoms? My main issue is the debilitating headaches, of which I've had for years.

And for both Esthersdoll and you, how did you both discover your gluten allergy. What test/ symptoms. if you don't mind.

I do remember my doc checking off the hormone section on the lab order form. Im assuming they were normal, he never mentioned anything and I was unable to ask. But what standard hormones get checked along with standard lab draws compared to what you mentioned above? Any ideas? Maybe Mark will know.

What could i ask for from my new PCP?

Thank you.

Quote:

Originally Posted by postconcussion (Post 876160)

I was getting skin rashes and wheezing a lot. I was pretty convinced (thanks to my acupuncturist) that it was some kind of gluten sensitivity. My Dr. ordered a blood panel to test me for allergies and it proved I am allergic to wheat and sesame seeds. I wasn't allergic to either one before the accident/brain injury.

I've had severe environmental allergies and asthma my entire life.

I never had a reaction like this before the brain injury from eating anything. I believe that the brain injury altered the chemistry in my brain to make me allergic to wheat and sesame seeds.