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


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Old 11-20-2009, 02:57 PM #1
Donna E. Donna E. is offline
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Trig New member: multiple TBIs 45+ years looking for info & support

Hi, just joined over here and Psych Talk yesterday, wanted to introduce myself. I'm 50 years old, married, 2 grown kids, 3 grandkids, have had progressively poor health, pain, periodic depression, lots of bizarre inexplicable medical problems/crises for many years, and recently became permanently disabled after fighting and toughing it out for years. Now I finally learned this year that the root of all the strange medical and mental problems was a very bad TBI 45 years ago (though I've had another serious one 20 years ago, and 2 minor ones in between).

I'd really like to connect with other people wih TBIs, especially chronic TBI, and learn more and get and give support with daily living functioning with a reprogrammed brain and its implications.

I want to be sure not to post inappopriately here, so I won't go into details in my howdy note that might be triggering, but I also want to cast a wide net, since I have various neurological conditions/diseases stemming from the brain trauma(s) that I'm trying to understand in context, but also learn how non-TBI folks cope as well.

On the TBI side, I am hoping to connect with other people who have experience with, or know someone with:
*diverse neurotransmitter dysregulation (known for me: dopamine (deficient), serotonin (serotonin levels high but low serotonin symptoms; suspect receptor issue), norepinephrine & epinephrine (specifics unclear), & other dysregulations not sure about yet)
*extreme broad paradoxical reaction to several classes of drugs that affect CNS esp affecting serotonin--affect similar to serotonin syndrome but even at lowest doses
*chronic immune system dysregulation after TBI (acute period=low immune function;later=auto immune type responses following medical event/injury/pain event (me: raynaud's, secondary schleroderma, rheumatoid arthritis, RSD-like inflammatory patterns, IBS--after surgery
*extended intracranial hypertension (I had 3 weeks in hospital, 8 months after discharge w/no medical treatment or supervision @ age 5)
*sympathetic storming initial recovery period, autonomic dysregulation thereafter aggravated by paradoxical reaction to meds

Outside of TBI context, interested in hearing from others familiar with:

* sero-negative autoimmune situations (can see inflammations, erosions, plenty of indicators of multiple inflammatory processes but blood doesn't tell the same story).
*autonomic dysregulation (hyperactive SNS/underactive PSNS) and approaches. (I have this, but without hypertension). I'm trying to get a handle on how this going off-course relates to the various illnesses that I have.
*comorbidities that interfere with each other
*fibromyalgia, IBS, & related using something besides serotonin-impacting meds (ie., SS/SNRIs/MAOIs/TCAs/lyrica/neurontin/narcotics/muscle relaxers, etc.)

Since I can't take meds to alleviate most symptoms (pain, stiffness, muscle spasm, mood, sleep,. etc.) except for CNS stimulants at this point, I've had to turn to non-pharm options, such as visual arts, journaling, other exercises to shift pain attention & engage the non-pain processing parts of my brain to ride out flares & avoid chronic stress, hot bath soaks, massage, topical analgesic creams. I am also taking prednisone & plaquenil for inflammatory issues, which controls as long as I remain inactive, but snowballs me on deconditioning and increases risk for more problems and aggravates other comorbids.

I am cognitively high functioning with periodic depression, chronic sleep impairment, chronic pain & memory impairment at times, had severe ADHD symptoms, impulse control & decision making require more time to process sometimes, but CNS stimulants help with mental organization, mood, energy, and some pain symptoms. I was the one who figured out what was wrong with me, after none of the doctors could understand why so many bizarre combinations of medical issues or response to treatment would go terribly wrong, I started researching myself (lost my job after so many medical problems), and discovered the one thing that was connected to all of them.

If you saw the first Star Trek movie (space probe falls into black hole, gets reprogrammed & repaired & comes back as a completely different entity no ne recognizes called "Vger"), then you've seen the story of my brain post TBI. Has its own rules and agendae, and nobody really knows a lot about the new life form or what its altered programming will do.

When I discovered this critical piece of information andmy theories, I presented it to my docs, and they investigated and had lots of aha! moments, told me that this was spot-on, but now they are sure that with this funky brain, there are very few options for treatment, and tell me that I am more likely to find workable options than they know about right now. Yay for the team, after 45 years!


I'm not bitter, the docs are good folks trying to help. I'm trying to learn how I can get on with my life, and navigate this new brain *superhighway* and its unique *pot holes*. Am still working with the docs to follow things and see if anyone comes up with new solutions, so this is me continuing to do my bit. Would love to hear from others who are familiar with any of these challenges, regardless of whether you've found solutions or not. I'd just like to know that I'm not the only one anywhere (I think there are others like me somewhere, and am optimistic that I will continue to find solutions if I keep working at it).

Just in case any of this might be triggering for someone, I'm going to go ahead and tag it, though I have tried to be careful with my phrasing but you never know.

Thanks! Donna
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Old 11-20-2009, 05:20 PM #2
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Donna,

Wow, what a story. Sorry to hear about your struggles but glad to see you found this place. You will find many helpful people on this board. Your first TBI paragraph sounds a lot like me just you are a bit worse.

Can you help me with a few details? What was your first serious injury and the latter moderate injury?

I had a serious concussion at 10 YO, a few moderate concussions and many mild concussions since. My critical mass of brain dysfunction hit me at 46 after a mild concussion.

How is you vertebral health? Unresolved cervical and upper thoracic injuries can cause many of the symptoms to mention. Are you peri-menopausal, in menopause, or post menopause? Hormones can wreak havoc, especially during the mid life years.

How are your nutritional habits? Do you take any supplements?

What kind of environment do you live in? family? noisy? busy and chaotic household? air pollution/ respiratory allergies? food allergies?

Do you react to over-stimulation? auditory, visual, tactile, olfactory (smell)

Where do you live? Somebody may have a good local referral for you. It is very hard to find good medical help for mTBI?PCS, especially when you are high functioning.

Are your doctors following any specific published methodology? i.e. Dr Amen, Dr Eric Braverman, etc.

Have you had a neuro-psychological assessment? What are you memory and cognitive impairments?

Any other neuro-rehab you've undergone?

Lots of questions to answer. Take you time. It has taken you fifty years to get to where yo are today. It will take even more time to find directions for you to take.

btw, I am dad to three grown kids with three grandkids. Some people say insanity is hereditary. We get it from our kids.

My best to you.
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Old 11-20-2009, 06:19 PM #3
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Hi Donna,
Mark asked some of the questions I had too.

I was mainly wondering how your injury/injuries came about.
and
what/where are your symptoms located that you mention??
(pain, stiffness, muscle spasm, mood, sleep,. etc.)


I don't have TBI , but did get a concussion from a horse accident in my teen years {almost 40 yrs ago}.
I didn't have any serious affects from it then.
But now that I'm older and had a job with constant repetitive arm & hand use as well as lots or reaching and lifting tools and parts, I did eventually acquire a chronic RSI/TOS condition.

I believe a factor in this for me, was the long term affects of the horse accident.
My theory - c1/c2 became misaligned most likely from the header off the horse, and over time caused the rest of my body to change alignment.
Then throw in being a "tomboy" playing various sports and other stunts, I did had other hits, falls and bumps through the years.
And also a minor car accident where I cracked my nose on the steering wheel.
So I had multiple small traumas and the repetitive job & age compounded all of it.

Just wanted to mention -
There is a condition called thoracic outlet syndrome {TOS} that can come into play from whiplash or other upper body injury in the neck, shoulder, collarbone areas. Usually shows as arm/hand/neck sx as well as upper back muscles spasms.

I'll add the link to our TOS forum sticky thread if you would like to look through it.
http://neurotalk.psychcentral.com/thread84.html
post # 1 has info sites that explain TOS and also a chiropractic section with info about the c1/c2 {atlas /axis} if you haven't read about it already.
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Old 11-20-2009, 06:42 PM #4
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This may sound like a stupid question but before I go into specifics it would be helpful to know your intentions. Are you interested in learning about the various therapies to rehab your brain, or are you only interested in learning about compensations?
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Old 11-20-2009, 07:28 PM #5
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Default Hi there

Mark has asked you good questions.

I too am 53, as I have remarried we have 4 married children and 4 grandkids between us. I was kod playing hockey at 16, then again when I was in a car accident at 21 - came totally right afterwards, then a couple of bumps in my 30s, and then at 45 there were 2 minor bumps approx 6 weeks apart which I have never recovered from fully. There is a thread near this one called symptons which I have posted those on. I may have forgotten that my blood pressure went crazy about 4 years ago and I ended up in hospital as a result, I now take medication for that.

I keep forgetting that my mother told me that as a baby I fell off her bed, bumped my head and vomitted for a day - that in hindsight was probably the first.

Sometimes I think that I am not as bad as Mark - other times I think I am worse than he is - it is so hard to measure. I am always worried that I could be a hyperchondriac! Duh!

I have been told that my immune system is not good - I have had pnuemonia this winter and now am fighting cellulitis - I fell over a plastic container and bumped my shin - balance is an issue.

Gave up working about 2 years ago - had been working part time since the last bump in 2001. I found that I was totally exhausted and reached the end of my tether had a melt down, went home and stayed home.

The boys here will give you lots of helpful advice. I have tried just about everything and am going to try nuerofeedback if I can find somebody in New Zealand that I can trust to do it. Must drugs that I have tried have given me dreadful (as in 10/10 want to die type) headaches.

Lynlee
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Old 11-20-2009, 07:31 PM #6
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Jo*marr,

You hit right on what I was getting to. TOS can be a major cause of many of Donna symptoms. I have browsed the TOS forum and it is very narrow focused compared to my experience.

My TOS causes my IBS, my autonomic dysfunction (possibly combined with upper neck inflammation), problem with my left arm and hand, etc.

My BP has dropped so low that I could barely get out of a chair (80/40). My blood sugar has dropped below 50. If a coroner had found me, he would have told someone to bury me. LOL

The problem I found was finding a physician who has a broad view of how to treat it. A Physiatrist referred me to a fabulous Physical Therapist. I have only found on chiropractor out of 10 I have tried, who could treat my TOS as well as my 'miracle worker' PT has. A Chiropractor I have seen for 20 years tried and could not help and referred me to the Physiatrist.

I hope we can direct Donna to a source of help. I went two years with severe IBS. My bowels were bloated and non-functional. I had paralytic ileum according to my PT. My ileal cecal valve would get stuck closed. She would manipulate it and would be rush hour in my bowels.

My C6 and C-7 were injured in 2001. It took two years of routine PT to get function back. Now, I can use a home massage machine to loosen up C-6, C-7 and the related TOS.

Why is it that head injury patients rarely get any orthopedic analysis of their upper spine? It seems like a brain dead concept to me. Bang the head, injured the spine. Maybe we need to teach the doctors that old song.

Lets all sing it.

The head bone's connected to the neck bones.
The neck bones' are connected to the back bones
and sometimes connected to false rib bones
especially for those of us with TOS

Maybe we need to work on the melody and timing for the last line. LOL

On another forum, a member is trying to start a political party called "The Experts are Clueless Party." Then maybe we can get some health reform that helps. LOL
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Old 11-20-2009, 09:10 PM #7
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Default Questions & answers

Mark, thank you soooo much for your thoughtful reply and questions! I've answered them below...

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Originally Posted by Mark in Idaho View Post
Donna,

Wow, what a story. Sorry to hear about your struggles but glad to see you found this place. You will find many helpful people on this board. Your first TBI paragraph sounds a lot like me just you are a bit worse.

Can you help me with a few details? What was your first serious injury and the latter moderate injury?
#1--> on my 5th birthday, I fell off an upper floor fire landing outside a gym 3 stories head first onto solid concrete, directly impacting on the right frontal & temporal lobe, closed head injury with 3 inch skull fracture, diffuse axonal injury with sub and dural bleeding. I was unconscious until the next day. They only had xray back then and had no idea about the extent of injury other than external indications at the time. Bleeding was diffuse, my father said I was urecognizable, my had swelled to 3 times its normal weight. I had nerve shearing. I was in hospital for 3 weeks, then they sent me home with no medication, and told my parents I would need bedrest for 2 months. That isn't how it worked out. Instead, I had cranial hypertension and periods of sympathetic storming for another 8 months. I was not medicated for this; the doctors told my parents to just keep me in bed, don't let me sit up or have contact with anything that might excite me. No playing or talking to anyone or movement until I was almost 6 years old. I had serious behavior problems from the first year after
the accident--all impulse control and unable to understand & comply with social conventions, like I was always singing from a different hymn book. I thought everyone else was strange.

Physical coordination was a problem, and I was always having accidents, and immune system was pretty useless. I got everything really bad, and was sick a lot. Outwardly I looked like other children, and I was book smart, could read really well and write, but processing information would drag sometimes and other times it didn't but it wasn't as bad till I hit puberty.

#2-->Age 11 was 2nd injury, struck same side of my head by my dad (back-handed me), knocked me to the wall and fractured my jaw. Didn't go to the hospital for 2 weeks; mom was afraid my dad would get in trouble. But my jaw was worse and I couldn't eat and was having headaches and they took me for xrays and saw the fracture.

I first learned that I had abnormal eye pressure before I was grown, with no family history of glaucoma. I had glaucoma by my late 20's & 30's had my first glaucoma surgery. I'm going to have another one next year. They now believe that it was also caused by had injury.

#3--> Age 24 had 3rd injury, 2nd serious TBI: home invasion, was severely assaulted--all in the head & face--had concussion, in and out of conciousness, lot of bruising and swelling--same side of my head, but that's all I know about the injuries other than what I could see on the outside.

Lots of severe depression after that, untreated PTSD, had to leave college for years. Hormone changes affected me severely. Started developing strange joint pain, inflammation, swelling, frozen shoulder & arm, couldn't use my dominant hand, both knees had inflammation but labs were seronegative

#4--> Age 36: 4th TBI-rear-ended in car accident, whiplash, then began chronic pain, severe depression, couldn't sleep, couldn't move, eventually diagnosed with FMS, all the meds were making me sicker. Meanwhile I was trying to get through law school, and they took me off everything till after law school, then they started adding drugs.

39-49: hired after law school into good corporate job; was really good at my job, but medical problems piled up, many surgeries, much damage, worked mostly from home when I could to manage pain but I probably had amost 3 years worth of medical leave till the last one a year ago, when they laid me off.

Believe it or not, I had a very positive attitude, until the RA symptoms suddenly showed up (already had Raynaud's, secondary scleroderma, and additional inflammatory things that they haven't understood yet). I'm still seronegative, but xrays show characteristic erosion in early stages. Inflammation, swelling stiffness, and color & temp changes happening in shoulders to hands & hips to feet since the inflammation happened earlier this year in hands & feet.

For years my docs have said my body was strange, nothing has made sense and they have maybe been more frustrated than me, because when they try to treat me for things (meds, surgery, etc.), something always goes awry and left me with another permanent complication. I've got three serious impairments from surgical attempts to fix me now. Irreparable bleeding ulcer precludes NSAIDS, am taking prednisone which aggravates it & plaquenil. Can't take FMS meds--pardoxical reaction, same for joint pain or sleep aids.

I've had other tumbles, but these 4 were significant based on what followed. The drugs during surgeries really damaged me badly, and impaired my mental function and I was afraid that I wouldn't be able to recover it. I have recovered function, but not consistently, and I have more periods of fog and mental fatigue than before, although I rest better at night now. I have to take lots of rest periods, and am not able to exercise due to inflammatory response (until the last couple of years I was body building; now I can't hold a pot lid with one hand). Not exercising aggravates everything else, and I've had a lot of muscle wasting. Chronic eye inflammation, too.


Hormones: I had a total hysterectomy during one of the reconstructive surgeries in 2006, so went through surgical menopause. I took estrogen patches for a while after that but stopped.


I had a serious concussion at 10 YO, a few moderate concussions and many mild concussions since. My critical mass of brain dysfunction hit me at 46 after a mild concussion.

How is you vertebral health? Unresolved cervical and upper thoracic injuries can cause many of the symptoms to mention. Are you peri-menopausal, in menopause, or post menopause? Hormones can wreak havoc, especially during the mid life years.
Vertebral health: I've had one xray that showed degeneration in my neck and had severe symptoms for a long time, lots of chiropractor visits, periods that I couldn't turn my head but lately that has been overshadowed by the other stuff. Shoulder impingement is creeping up again, got cortizone shots again recently.
How are your nutritional habits? Do you take any supplements?
Digestive/diet: due to abdominal surgery complications, my stomach, small intestine and part of my colon were permanently damaged and are dysfunctional. I've gotten used to it now, but I have great difficulty with tolerating food since 2003, but I do best with very raw foods, not processed or fatty or sugary. I can't absorb a lot of nutrients well from food, but I take tons of supplements, get injections and prescriptions of iron, V it D, and have labs run at least every 3 months, which fluctuate but are currently good. I get sick easily so eating out is iffy. I have a poor appetite and have to make myself eat, but I haven't lost weight in a month.
What kind of environment do you live in? family? noisy? busy and chaotic household? air pollution/ respiratory allergies? food allergies?
Home environment: it is chaotic in terms of housekeeping. I was the main housekeeper, and can't do much now. Husband tries sometmes, but mostly lets things go. I have taken over the den so I can have quiet space and have things to do that are accessible, so that room works well for me for waking time. When others are making noise around me, I have some airport type headphones to block out noise so they don't have to tiptoe around me. My husband is really sweet and we're very close, but stressed with the situation, and his restless legs & snoring disturb my sleep so I sleep alone these days, but I have a clean and peaceful sleeping environment now. Money is a problem-I was the main breadwinner, and we've consumed our reserves. My doctors have urged me to apply for disability (again), and this time I finally applied. While I can find ways to cope wth the physical discomfort, this time I couldn't regain enough function to resume a career. I can't even handle a lot o daily living functions on my own now, I know it may sound odd to say, but I am really grateful for what I can do. I just don't want to lose more mental function if I can help it.
Do you react to over-stimulation? auditory, visual, tactile, olfactory (smell)
I have ADHD (always have) and was constanly in noise (which was miserable for me), but it helped me drown out the noise in my head until I got on meds last year, then my head stopped being so noisy inside, the I have kept things quiet ever since and really can't handle noisy places for long. I have a LOT of sensitivity to light, sound, smells, tastes, touch now. I have had central auditory processing dysfunction since the fall as a child--very hard to discriminate sounds, understand speech if there's any other noise. My mom thought for a long time I had hearing loss because I talk loud, too, but I was tested about 10 years ago, and they found out that my brain has a severe processing problem, but my ears work correctly.
Where do you live? Somebody may have a good local referral for you. It is very hard to find good medical help for mTBI?PCS, especially when you are high functioning.
I live in Durham, NC in central NC. I wish I knew a good neurologist to work with. The psychiatrist has a background in treating people with brain damage, and she wants me to have some good studies done, with the chronic pain and other stuff, she wants to get someone to map out my current state, and have a baseline for tracking deterioration. I'd really like to understand as much asI can about risk factors, what can be predicted based on what they already know, and if there are safe meds of any kind that might help me at least with the autonomic dysfunction so my SNS can get a break. I have gotten really good at managing emotional stress, and even mental exercises for managing pain perception and limiting stress responses to it, but I think I could use some medical help with quieting SNS and activating PSNS better.
Are your doctors following any specific published methodology? i.e. Dr Amen, Dr Eric Braverman, etc.
Not to my knowledge. If you have some references, I would love to plug into it.
Have you had a neuro-psychological assessment? What are you memory and cognitive impairments?
It's been a long time since it was measured, certainly not since my 20s. I'd like to know what they look like now.
Any other neuro-rehab you've undergone?
No, unless you count having a big tens unit for my neck and spine. I would like to know more about what kinds of rehab they do these days?
Lots of questions to answer. Take you time. It has taken you fifty years to get to where yo are today. It will take even more time to find directions for you to take.

btw, I am dad to three grown kids with three grandkids. Some people say insanity is hereditary. We get it from our kids.

My best to you.
Let me know if anything was unclear or you had more questions. I'm just so relieved that someone knows what I am talking about besides my docs and my husband. My parents know, but most of my family feels uncomfortable talking about it, except my husband faithfully listens and cares, but I don't want to wear him out more than he already is. My friends have stopped coming around since I got sicker, and I have begun to feel a bit isolated lately.
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Old 11-20-2009, 10:40 PM #8
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Originally Posted by Jo*mar View Post
Hi Donna,
Mark asked some of the questions I had too.

I was mainly wondering how your injury/injuries came about.
and
what/where are your symptoms located that you mention??
(pain, stiffness, muscle spasm, mood, sleep,. etc.)
Shoulder problems followed neck problems became frozen shoulder for 5 years, that got released, and lots of chiropractor visits for back, neck, arms, then it was better for a while, then up and down. Early this year, all the joints in both hands and wrists swelled up turned red and hot, also my ankles. Already had Raynaud's in hands & feet, but when this developed it got much worse. Nerve abnormalities found in my hands + erosions. While being treated for that, I developed progressive pain & impairment in my arms, inflammation & swellng causing impingement, and my shoulder started getting locked up again. Hips and knees also followed. I had cortizone shots in one shoulder and they increased prednisone.

Mood impact I had since early but became much worse when I hit puberty, except when I was pregnant; then I felt great. When I went through infertility treatment it nearly killed me; my body totally broke down, and fell into a black hole for a while. Hysterectomy took me down a bit too. But every time they gave me meds for surgery or pain or mood, I got really bad every time but they didn't realize for years that the meds were making me sick until I almost died after surgery.

Repetitive activities always cause inflammation in whatever joints are involved. That has gotten worse over time.
I don't have TBI , but did get a concussion from a horse accident in my teen years {almost 40 yrs ago}.
I didn't have any serious affects from it then.
But now that I'm older and had a job with constant repetitive arm & hand use as well as lots or reaching and lifting tools and parts, I did eventually acquire a chronic RSI/TOS condition.

I believe a factor in this for me, was the long term affects of the horse accident.
My theory - c1/c2 became misaligned most likely from the header off the horse, and over time caused the rest of my body to change alignment.
Then throw in being a "tomboy" playing various sports and other stunts, I did had other hits, falls and bumps through the years.
And also a minor car accident where I cracked my nose on the steering wheel.
So I had multiple small traumas and the repetitive job & age compounded all of it.
When did you make the connection with the head injury? My parents never talked about how bad it was until I discovered the connection and asked them to tell me what the docs said, what happened along the way. I only remembered hearing them arguing over my body after I fell because the ambulance was stuck in traffic and they didn't think I was going to make it if they didn't get me to the hospital. I don't remember anything after that until I was almost 6. My mom said that I was unconscious but I remember hearing them, and she said I was right about the argument. Then when I told my dad recently about my brain injury, he said, "I wondered when that was finally going to come up. No one believed you'd ever live back then, and I was waiting for this to happen." I never quite know what to do with statements like that. Then they told me the details.

You mentioned being a tomboy; horrifying to my parents was my poor impulse control and adventurousness. I was always getting into risky situations after that, a free spirit who wanted to climb trees, houses, explore everywhere as I grew up. To them, I looked like a tomboy.

I'd like to learn more about TOS; those describe me well starting after I had whiplash.

Thanks for sharing with me!

Donna
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Old 11-20-2009, 10:48 PM #9
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This may sound like a stupid question but before I go into specifics it would be helpful to know your intentions. Are you interested in learning about the various therapies to rehab your brain, or are you only interested in learning about compensations?
Hi, I am not sure I even understand what that means. I can't cure my brain, but I am trying to learn to cope and make the best of it however I can and have quality of life. If there are therapies that some have found helpful or something else, I'd love to know more. I'm not sure what compensations means unless it is another way of saying adjustments or aids?

And I'd love to know of any other TBI or other brain injury survivors who have paradoxical reaction issues with meds.

Thanks so much for your questions, I think I'm going to learn something from this!

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Old 11-20-2009, 11:57 PM #10
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During 03/04 I was researching a lot my RSI injuries, and that lead me to learn about TOS, and then that led into body awareness and alignment issues.
So when I started reading about spinal misalignment and the symptoms and upper cervical adjustments, a light went off for me.
The horse accident !
He was a awesome horse, not his fault, I hadn't had him very long when this happened and he wasn't fully trained yet.
but they do say this misalignment can happen during birth also...

My body had coped all those years just fine but I think the yrs of speed {type A work personality}, long hrs doing repetitious assembly work and hitting my 40s triggered all the injuries.
My shoulders are not even, my hips are uneven, ribcage a bit uneven, even my eyes /ears are a little bit off.
never really noticed it until I read about the c1c2 stuff.

Always had a heck of a time getting my safety glasses at work to fit evenly on my face LOL.
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