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

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.

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.

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?

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

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

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!

Donna

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.

Donna,

The reason why I asked is because some people are not interested in reading about therapies for their brains. So, instead of spending my time typing out information that falls on deaf ears (so to speak) I thought I would gauge your interest first.

No, unfortunately, there aren't any cures available yet. However, with the advent of stem cell technology, there will be in the near future. If you begin to keep up with the science of it, you will soon discover that scientists are making huge headway towards a cure. For example, there is a stem cell gel that has been shown in animal studies to completely regrow injured brain tissue caused from a trauma to the head. This study is only 3 years away from going to clinical trials. So, it is just a matter of time before a definitive cure is established.

There are therapies available that can help you reduce your symptoms and cope with life better. The brain, even a damaged one, has a remarkable capability of changing itself. I'm sure you've heard of this being called neuroplasticity. These therapies are not considered a cure, just like insulin is not a cure for type one diabeties; however, similar to insulin for diabetics, if done properly by a qualified and experienced professional, these therapies can improve your quality of life.

Here they are, in no particular order. Neurofeedback is one therapy you might try. This is a tricky one because it is only as good as the therapist administrating it. My guess is that you would be considered a 'tough' case which would require more advanced forms of neurofeedback. The one I would recommend is the LENS therapy. Neurofeedback is considered an alternative therapy, but it, especially the LENS, is quickly becoming a conventional treatment for head injuries. The designer of the LENS is actually presenting his research before the VA administration as a theraputic tool to use with Iraqi war vets who suffer from PCS and PTSD. The LENS is also an FDA approved device. There is also research that demonstrated in a population sample an 80% reduction in symptoms.

Another therapy you could look into, although I'm not sure if it would be of any help or not, is Hyperbaric Oxygen Therapy. The results from this therapy are not as consitant as the results from neurofeedback, and it is time dependent meaning the closer to the injuries you do it, the better the outcome.

A third therapy is cranial sacral therapy. I've only tried it a few times and it did a good job of relaxing me, but it never really did much else. I've read anecdotal reports from other head injured folks who swear by it.

Of course, and this goes without saying, you should get on a good diet with low simple carbs/sugar and high protein, vegetables and fruit. You should also get your hormone and vitamin/mineral levels checked. One regular poster on here supplemented some of his hormones and he said that it made a big difference. And, you may also want to supplement the B vitamins as it has been suggested on here that an injured brain's vitamin B requirements are higher than an uninjured brain. You should also look into getting on an omega fish oil supplement.

My doctor recently told me about some new alzheimers/dementia drugs that will hit the market soon that have demonstrated in studies to reverse the symptoms of alzheimers/dementia, and he speculates that these may be beneficial for PCS as well. There are also a couple of drugs that are being used in asia and europe to treat head injuries/pcs, but are considered supplements over here. These are oxiracetam (and any other racetam) and cerebrolysin. I wouldn't recommend using these without consulting a knowledgeable physician. However, most physicians in the U.S. aren't familiar with these. The really good ones are that have a lot of experience treating head injuries though.

I think that is all, at least that is all I can remember at 5 in the morning. Again, these won't cure your brain injury, but they are very likely to reduce your symptoms and definitely improve your quality of life.

Good luck.

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