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

welcome to NeuroTalk Donna

I have also copied your post over to our TBI/PCS forum as the members there dont always look in here on the new member intros

here is the link to your post there so that you can check for replies there as well
http://neurotalk.psychcentral.com/sh...d.php?t=108553

Welcome to NT

You have come to the right place. You'll find tons of support and ideas here. We share to help each other, as our journey unfolds as well.

You have a lot on your plate. May God bless...

Hello Donna and welcome to NT!

PCS is a complex injury. The Brain Injury Association of America www.biausa.org is an excellent resource for patients and family members trying to understand and treat this sometimes life-altering injury. Another site to check out is www.tbiguide.com The link to the TBI forum here at NT is http://neurotalk.psychcentral.com/forum92.html

There are a lot of us brain boo boo folks here at NT. Some of our members are experts in PCS and I'm sure they'll be along to help answer any questions. In the meantine, rest assured that you are among friends who understand what you're going through.

Cheers