Post concussion dysautonomia bTbi mTBI

@elizabeth7 - sounds like a difficult time. Post-concussion dysautonomia, POTS, orthostatic hypotension, worsening temperature intolerance and suppressed immune system area a low to deal with.

Fellow Connect members such as @lakelifelady @kayabbott @nanacate may have some thoughts about dealing with all these conditions after your TBI and can let you know if they've experienced similar. @scottrl also may have some thoughts for you.

Since you mentioned backtracking to check hypothalamus/pituitary/adrenal axis, I wondered if you have upcoming medical appointments/testing? If so, when are any of these coming up?

@elizabeth7, my moderate TBI was 33 years ago and mostly hit my emotional and word finding areas. I have balance problems from celiac-related polyneuropthy. PT can help with balance, both retraining muscles and nerves and learning tools. POTS and other TBI-related cardiovascular problems should be evaluated by a cardiologist. My thyroid also was affected by my TBI; hypothroidism with associated weight gain and mind-body sluggish (controlled). Fifteen years is a long time to hope for answers, treatments, and what comes next. I hope you can get a complete evaluation by a range of specialists, particularly with worsening symptoms. https://pmc.ncbi.nlm.nih.gov/articles/PMC9136088/ https://my.clevelandclinic.org/health/diseases/6004-dysautonomia https://pmc.ncbi.nlm.nih.gov/articles/PMC4633482/

Thank you. I am being seen at a dysautonomia clinic since 2025.
I’m working very hard to get a MRI that shows the white matter injury so that I can get seen by a Neuro endocrinologist. Also doing pituitary serum. It’s astonishing that I never got treated or assessed for the concussion at the time of the injury as everything was being pointed to as PTSD.
Thank you for your insights.

@lisalucier I have been waiting for my hormone replacement therapy that I discontinued to clear from my system. I should be getting the pituitary serum the first week of November and I’m also hoping to get the specialized MRI in November.
I got referred to a concussion specialist that I have a telemedicine appointment with in January but I’ve had a difficult time finding concussion specialists who understand long-term issues and have an idea about how to mitigate the problems with occupational therapy or physical therapy or any other insights. I’m very open to hearing about clinics where people have had successes with this kind of complex issue. I also have suppressed immunity stemming from this event, which is why we think the HPA axis is important.

@elizabeth7 It is a bit of a stretch, but there are also clinical trials for some chronic TBI symptoms. I trying to get on one for my early-stage cancer (new treatments are more effective than standard for my MM). Even if they don't work for you, they can give some interesting insights for new or future treatments. The site is Clinicaltrials.gov ,

Great idea. It is so validating to me to hear that other people have ongoing chronic symptoms and that there are actually clinical trials.

@kayabbott might’ve found one at Ucla that’s recruiting. I’ll let you know.

@elizabeth7 Let me know how it goes. It can take a while to jump through the hurtles and get on trials, but time is something that we still have.

@kayabbott argh the study is just concluding but they pointed me to the ucla concussion center.

@elizabeth7 That is a first step, and hopefully will include a full analysis of your symptoms. I hope you live near UCLA or another trauma center. Getting on clinical trials can be madening; I've been trying for 3 mo so far, but do have more test results and an expert on my cancer. Having experts that focus on your complex issues is good (but still madening). Searching on "clinical trial links for traumatic brain injury" may give you additional resources. We are jigsaw puzzles with a lot of missing pieces.