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

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- - 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)

For those who are interested in treating their brain injuries

Hello All,

I am a newby on here, but I found this place and wanted to share my story in hopes that it will help you all in your road to recovery.

I am a 34 year old graduate student studying finance and economics. I have suffered from around 30 concussions from sports and car accidents. About 5 years ago, I had to give up on life and thought that my life was pretty much over. I attempted to commit suicide twice and almost moved to Florida to become a homeless person. At about that time, I discovered through my research, that you can heal your brain from a concussion, even multiple ones. So, I began a very long and very arduous journey towards healing. I have pretty much done every therapy there is, and I have had success from some and failure from others.

Although I still do have some difficulties in life from the brain injuries, for the most part, I am pretty much recovered.

I'd be happy to answer any questions any of you may have regarding treatment for you brain injury.

M

I'd be curious to hear about what approaches worked and did not work for you.

We always love to hear the success stories... please share?

Well, the list is very exhaustive but I'll start with the basics.

First and foremost, I had my hormones checked out by a qualified physician. Unfortunately, most endocrinologists and primary care physicians know very little about the endocrine system, so I was forced to seek what are called "anti-aging" doctors. Probably seems kinda contradictory that an endocrinologist wouldn't know anything about the endocrine system but I went through 10 of them and all of them told me my hormones were fine. When I finally got with a doctor who knew what he was doing, he put me on the right hormones and I began to dramatically feel better. Hypothyroidism, Hashimotos, Adrenal Insufficiency, Hypogonadism and Hypopiuitarism are all very common in head injury.

I also did some other therapies but I would say that getting your hormones checked out would be the first place to start.

M

Colorrado Mike,

I've recommended getting hormones check, especially for women who tend to be more prone to hormone imbalances. Womens International Pharmacy has a good referral system for finding a specialist. You are right that the anti-aging specialists usually have the best skills. Here is the link https://www.womensinternational.com/..._referral.html

What other therapies have you had success with and which ones were a waste of money. I bet most, if not all have been discussed from time to time. We always like to hear success stories.

What symptoms/difficulties do you still have? Maybe we have some tips for you.

btw, I think I'd rather be homeless in Hawaii. Florida can still get cold and have horrible weather each season. LOL
I could live a good life on the street in a good climate with SSDI each month. My wife would not like it though.

Googling Anti-Aging Doctors in the Los Angeles area didn't do me a lot of good.... there are way too many "anti-aging" service providers here.

My PCP has tested my hormone levels and confirmed they are fine. I specifically asked her about it because it's so common to have issues with these areas after a head injury. It might be a good idea for me to get checked out by a specialist.

THis is a very serious topic and I appreciate your post very much, but at the same time I could not help get a tickle out of the phrase "almost moved to Florida to become a homeless person..." somehow the phrasing was just funny.

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.

Hi Mark,

See my answers below.

Quote:

Originally Posted by Mark in Idaho (Post 875884)

I have often mentioned how most doctors, even endocrinologists, use a very broad range of hormone levels and then a shotgun approach to treating the irregularities. That is why I have been recommending Women's International for a referral for more than 2 years.

Mike, When you mention neurofeedback, you need to be more specific. Did you use volitional neurofeedback or non-volitional neurotherapy? There is a world of difference.

I did both volitional and non volitional. Volitional wise, I did Z-Score training and non volitional wise, I did LENS. They both worked very well for me but the LENS was easier b/c I didn't have to do anything but just sit there and let the machine do all of the work. The LENS was very touch - and - go though b/c some days, I'd walk out of my therapists office feeling worse than when I got there. But in the end, it all worked out well for me.

What kind of treatments did the DO do with the CST?

Not sure on this one. I guess DO's do the original form of CST and most CST practitioners do a watered down version of it. My DO told me that if someone wishes to specialize in that area, he/she has to spend three years in training whereas a therapist who gets certified in it only spends a few weekends in training. She would basically put her hands on my feet to ground me, then she would put her hands on my chest and then she would put them under my head. I always left there feeling really good.

How many HBOT treatments did you undergo?

I did a protocol that is being researched right now that calls for 80 treatments at 1.5 ATA. The protocol was part of a research study.

Did you modify your diet by excluding any foods?

Yes! I discovered that I had a sensitivity to gluten and that my gut was a war zone. The doc who helped me with this said that a lot of folks with nervous system issues have very bad guts. I guess this happens for two reasons. One, 85% of our seretonin is made in the gut and transported to the brain. When you have inflammation in your gut, seretonin production is greatly reduced and that can cause major issues. Two, the vagus nerve innervates the gut and when you cause inflammation in your gut, you cause it in your brain as well. So, I am basically on the Paleolithic Diet right now. Feel better and lost a bunch of weight too.

How do you know what improvements resulted from each treatment modality?

Well, that's a good question. I do know that the hormone therapy played a huge part in all of this. So, I know that definitely helped. The HBOT really helped with my vision, balance and sleep. The Neurotherapy really helped with my cognition and impulse control. The diet really helped with fatigue. The CST helps but to me it's more like getting a massage b/c it really relaxes me. The next day, I'm usually back to being "normal." But I like them enough that I go about once a week. Now, I'm sure there was some overlap in there but that is what I can recall each doing.

Every treatment/therapy you mentioned has been mentioned many times here. There has been no consistency in result with different persons having the same therapy.

Yes, and that is true of any treatment. My mom contracted stage 4 melenoma skin cancer about 20 years ago before there were the treatments they had today. She was told by her cancer doc in Colorado that she had about 5 years to live. So, she decided to try a novel treatment at the John Wayne Cancer Institute that is now a standard treatment for that type of cancer. The #1 thing the doctors told her was that she had to prepare her body for the healing that would take place. So, she had to get on a special diet, she had to take certain hormones, start exercising etc to get her body as ready as she could. The treatment worked and she is still alive and doing well. I like to think of neurorehabilitation in the same way. I think people get varying results because we have varying conditions that our bodies are in. One may have a gluten allergy and not know it, so none of the therapies will work at all. Another may have a B12 or Vit D deficiency or maybe low testosterone, etc. I think the ones that do the best with the rehabilitation are the ones who had healthy bodies to begin with. This happened to me and it wasn't until I cleaned up my diet and got on the correct hormones that the therapies began to work correctly.

As the saying goes, "If you have seen one brain injury, you've seen ONE brain injury."

Very true! Not one is the same and some, no matter what they do, won't be able to recover any function. However, I believe that these are in the minority and that most can at least gain some functioning back which as I'm sure you know, even a 10% reduction in symptomology is huge.

btw, Were the 30 or so concussions all diagnosed or have you learned to identify them and track them without a doctor's input. Does the count included sub-concussive impacts? If you are so concussion prone, what changes did you make to reduce your concussion
risk?

Only 8 of them were diagnosed but I was told that anytime I hit my head and was a bit off or saw stars, that was a concussion. So, my I figured the number was around 30.

Well, of course, I stopped playing contact sports. Actually, aside from running, hiking and other endurance sports, I quit all other sports. Getting my balance back helped too so that I no longer bang into stuff. Anytime I'm in a situation where I'm at risk of hitting my head, like getting something out of the car or being on a ladder, etc. I always live by the one, two, three rule. One, asses the situation - visually examine everything in my immediate surroundings to make sure I'm aware of where everything is so as to avoid bumping my head on it. Two, slow down and breath. I take deep breaths so that I can remain calm while I'm doing whatever it is I'm doing. I like this one b/c it allows me to remember that I'm in a potentially dangerous situation that I need to be aware of. Three - stop and take a deep breath before I stop doing what I was doing. Again, this allows me to remember that I'm in a potentially dangerous situation. It takes me a bit longer to do things because of this and my friends will sometime chuckle at my when I do this, but it's proved pretty effective.
Other than that, I'm just careful. I've gotten used to it by now, so avoiding hitting my head has just become second nature to me.

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)

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.