Post TBI hyperandregenic dysautonomia. I'm glad to know what's going on with me, but I'm sad that it's not going to get better.TW: injury
In September 2022, I sustained traumatic brain injury from a violent attack.
I was beaten repeatedly in the forehead by somebody in psychosis. Heartbreaking. For about a year and a half to two years after the incident I threw up everyday at least 5 to 7 times. Emotional instability, I don't really have any memory for about 2 years. I remember in Spring of 2024 I went outside for a cigarette and I looked up at the trees, I literally had to sit down and cry because they were so green. I didn't have the ability to fully see color I suppose, but something had healed or changed and suddenly I could see a full spectrum of color again. I'll never forget that emotional flooding.
I've been having health issues since the TBI and have been diagnosed with ADHD, persistent post-concussion syndrome, IBS, major depressive disorder, panic disorder, anxiety disorder. In addition to that I was diagnosed with early perimenopause at 39 last Summer, after I had what I thought was a panic attack but after heading to the hospital on Wednesday, I now know it was an andregenic tachycardia episode. On Wednesday I was checking my blood pressure as I was told to do as it was day three on spironolactone. It was 107 over 71 which was pretty all right. I stood up quickly and it felt like I was hit in the chest with a jackhammer. I checked it again and it was 159 over 109.
So I called my neighbor and we began the 35 minute drive to the emergency room. Of course upon arrival I was told that I have anxiety and panic disorder and he suggested I see a psychiatric doctor. I literally laughed in his face. I said I just advocated for myself, explained everything that's going on, and showed up here presenting as a cognitively calm individual in acute physical crisis. Does that say panic disorder to you? Do I seem panicked? No. I was given a half a tablet of lorazepam at my request as I don't like taking a full milligram, and after a complete blood work including troponin, I was sent home. I don't have any control over these episodes. I don't do anything to cause them. There's nothing going on in my life that even warrants me to get upset. I don't understand how these doctors just label a person as unstable or psychiatric rather than take a look at the big picture.
I was able to speak with my nurse practitioner today. I gave her a four-page clinical summary with a page of peer-reviewed references supporting my hypothesis, hyperandregenic dysautonomia. She listened. I now have a referral to the university hospital autonomic clinic. Finally after almost 4 years of being told that PTSD is my issue, after being told that the white matter foci on a t2 MRI scan were "probably" migraine sequelae, and after being told there's nothing anyone can do about persistent post-concussive syndrome aside from give me SSRI medication or metoclopramide, I finally have some answers.
I am feeling a little better about things but I'm also really dang sad that the brain injury has changed so many things about me. Like I was a high performer, extremely active, physically demanding job, loving life, happy... Now I can't even stand up without having a ****ING jackhammer go off in my chest. I seem to have these sensitive episodes where things will flare up for a while and then I'll feel okay for a little bit and then it flares up again. It's been literally debilitating. I never signed up for this. Some of you guys out there are so strong, going through this everyday. I've only been doing it for a few years and I am worn down. Like I am a husk of my former self. Trying to stay positive and all that, but remembering what was taken from me because of one person's mental health.. that's a heavy burden to carry.
Well if you read this far thanks for listening. Gladly take any advice to anyone else who has this particular subtype. If anyone else has been through a similar incident I'd love to hear how you're doing. Sending lots of love to all of you guys out there suffering with this.