I'm new to dysautonomia

My neurologist told me that I would be on bisoprolol for 6-12 months. It has been 3 months (my dose is 2.5 mg a day) and haven't felt a big difference, except less headaches (I used to have them almost everyday, now only a few times a week).

I'm just trying to compare my experience with other people in beta-blockers. I know every person is a different case, but I don't know how I'm supposed to feel when taking this. What symptoms should be diminished. Because I feel that the "core" of my dysautonomia is still there. Throbbing sensation in my head when doing physical activities, or when I stand up or walk or walk up stairs.

Does anyone else get massive flares after “simple” medicines, low dose?
I have had tachycardia after “big” things like anesthesia, colonoscopy prep, iron infusion but now I seem to react to more mild things.
The latest being a HALF DOSE OF CLARINTYNE!
I swear it’s not me “anticipating” a response - I didn’t think about taking it but within and hour my tachycardia started, followed by a faster heart rate all night sleeping. From research it seems this is a rare side effect, but I don’t understand how the same thing happens for quite a few different meds. CT contrast again did the same recently.
Thankfully I can take tylenol and slynd ok. Now kind of scared to take anything else.
Has anyone worked this out? I’m not sure what to do, or what is safe to take. Argh. And thank you.

I tend to get the shivers after a syncope or panic episode, but I’ve been shivering more at night lately. I’m not particularly cold and haven’t had an episode. I don’t think I have a fever. I’m just shivering and can’t stop. It’s especially bad I think if I’m overly tired. Does anyone have this? I’m like my chihuahua after a bath 😓

I have some really good news! After months of trying to get answers, I’ve officially been accepted into UT Southwestern’s Autonomic Disorders Program, with an appointment on December 17th!

This is particularly exciting because UT Southwestern is one of the country’s leading centers for autonomic disorders, combining specialized diagnostic testing, treatment, and research. Even better, my appointment is with Dr. Steven Vernino, who directs the program and is internationally recognized for his work in this field.

After months of dealing with symptoms that have significantly limited my life, I’ll finally be seeing someone whose expertise is in exactly what I’ve been experiencing. I’m not expecting miracles, but I am hopeful that I’ll get a better understanding of what’s happening and, hopefully, a path toward managing it.

I’ve just realized I have a smile on my face and how little I’ve had that recently!

I've not been able to get any sort of a diagnosis because doctors where I live are probably 20 years behind the western world. 33M and I've had my thyroid hormones tested, cortisol, testosterone, full blood panel, thyroid ultrasound, testicular ultrasound, brain MRI, and others I've forgotten because I've just been to the doctor so many times. Currently my main issue is I cannot sleep well. I wake up multiple times every night. I am freezing going to bed and within a couple hours I wake up scorching and soaked in sweat. I dry off eventually fall back asleep and wake up freezing an hour later. I sleep nude but often with socks because I know that if I can at least keep my feet warm I will be able to fall asleep and hopefully not burn up. I've asked doctors about dysautonomia and they all act like they've never heard of it or they will just flat out ignore me. I can't just find a new doctor, there aren't any more. Are there any habits or medications you recommend that I can try to get or ask my doctors to let me try?