u/Fun_Sea_1109

I really need advice or insight from anyone familiar with dysautonomia/chronic illness, especially if you work in healthcare. I need to stress the fact that I do everything, I am extremely determined, and I’m fighting for my future career and overall life goals. There are a million of other details I need to share, but I’m trying to be as condense as I can for this post so it doesn’t go on and on.

I’m almost 21 and have a long history of trauma and mental health diagnoses including cyclothymic disorder, BPD, PTSD, ADHD, GAD, and MDD. However, I’ve tried countless psychiatric medications over the years and either had severe reactions or absolutely no benefit. I’m also clinically diagnosed with autism, and as I’ve gotten older, I’ve started questioning whether many of my symptoms were interpreted through the wrong lens for years. I’ve been treated as if I have severe anxiety and mood problems and that may be the reason the therapies and medications have never worked for me, only worsened my condition. Regardless, I’m beginning the full psychiatric evaluation rather than just evaluations for specific conditions.. to see. This begins June 1st and is a 6-8 week process from where I’m at.

On the physical side, I was officially diagnosed with POTS in March 2023, along with inappropriate sinus tachycardia in 2024, MCAS here in 2026, and hidradenitis suppurativa (which I’ve had since childhood). I’m currently in the diagnostic process for hEDS and PCOS as well.

What’s confusing is that over the last 2 years, I’ve developed increasing bradycardia in addition to tachycardia. It became symptomatic enough that I ended up in the ER on February 1st of this year. I’ve had a complete cardiac workup and structurally my heart appears normal. I’ve tried beta blockers, but they worsened things as I do not have blood pressure issues, and now doctors are hesitant to try Ivabradine because of the bradycardia. I’m currently doing a 30-day MCOT monitor and will repeat a tilt table test soon.

The biggest issue is that after major traumatic events, my body seems unable to recover anymore. I’ve experienced severe worsening since a car accident a little over 2 months ago where I was hit by a company truck. Psychologically, I’m actively working through it in therapy and returning to EMDR specifically, but physiologically it feels like my nervous system has completely crashed afterward.

For over 2 months now, I’ve had nonstop symptoms with no relief at all:
- intermittent fevers/“flu-like” episodes without infection
- severe worsening pain
- exercise intolerance
- severe fatigue
- worsening dysautonomia symptoms
- increased sensitivity to touch/massage/bodywork
- symptomatic bradycardia despite also having tachycardia
And more, but it’s too much to list so these are the main and most pressing concerns.

The frustrating part is that I genuinely do everything doctors recommend and I have for years. I stay active, walk daily (although now heavily broken up with rest periods), do PT, use compression garments (even though they tear up my hands/skin), maintain higher sodium intake, avoid caffeine, meditate multiple times a day, stick to routines, manage my mental health aggressively, and spend a huge amount of time researching and organizing my medical information. I even make organized PDFs and symptom logs for every specialist I see.

I’m not someone who neglects my health or spirals over normal life stressors. I’ve spent years building coping skills and understanding my mental health. That’s why it’s so hard to understand why my body continues getting worse despite doing “everything right.”

I also live in very rural northern Louisiana, and access to specialists is terrible. I’ve been referred to every possible specialist in-state that could help me which are booked anywhere from 8 months to 2 years out, including out-of-state options.

At this point I think what scares me most is that my nervous system feels stuck in survival mode physiologically, even when mentally I feel relatively calm and self-aware.

Has anyone experienced trauma or major stress causing a massive worsening of dysautonomia/POTS symptoms long-term? Especially with both tachycardia and bradycardia? Or have any guidance whatsoever? I feel very lost right now. I have not been able to work, I’ve had to medically withdraw from my schooling, and despite not giving up and continuing to do the things I need to even when it’s hard, I’ve simply had no relief. Also how do you even manage this financially? I have had to completely rely on my mom and step-dad and it’s been unbelievably challenging. I’ve also attempted two times now to try and go out with my mom to do something fun like just watching a movie, and I can’t maintain these either. My life has just been doctor’s appointments, therapy, physical therapy, moving, eating exactly the way I need to, getting tests and procedures done, and that’s it. No answers, no guidance, no relief. Financially this has taken a huge toll and I simply do not know what else to do, but regardless my main concern is simply just having any ounce of relief of my pain.

Edit: I also need to note I have lost weight. I’ve been over 200 pounds since I was 16 years old. At the end of 2023 to the beginning of 2025 I have lost over 100 pounds as the highest weight I got to was around 296-300 pounds. I am now 191 pounds and no, I also have not lost muscle which is the factor others in the past have stated could be a huge contributor to these symptoms. I actually have higher muscle than average, I consume over 100g of protein a day, I do not even have any vitamin deficiencies. I document my nutrition because of the movement to make sure I am not under-feeding or under-fueling my body so I adjust my calorie intake and my overall nutrients depending on the movement I do for the day. I heavily monitor every thing in my life and this is just another aspect I wanted to make sure to include!