Dysautonomia is ruining my life, no help from doctors

I am so sorry, but, I am not familiar with this at all, but, I am on my knees praying for you right now. God Bless You!

https://www.synergyhealthconcepts.com/dysautonomia-3/
https://thedysautonomiaproject.org/find-a-provider/
It's so difficult to look for help when you aren't well.
Beccamarieg An injection called the stellate ganglion block is said to reset the autonomic nervous system. Regardless of the cause of your dysautonomia, the block may give you relief from symptoms.
https://dreugenelipov.com/dual-sympathetic-reset-dsr/

Have your doctors come to a conclusion about the cause.?
Is yours from autoimmune disease
or genetic. What symptoms are they
Trying to relieve.?

@beccamarieg Finding the right doctor seems almost impossible, doesn’t it. Here are some resources you can try;
NORD. National Organization for Rare Diseases. https://rarediseases.org/
GARD Genetic and Rare Diseases. https://rarediseases.info.nih.gov/ The organizations have similar names but are totally separate. They both have lists of doctors who specialize in autoimmune diseases. The Autoimmune Association. https://autoimmune.org/autoimmune-awareness-month/ Has lots of information and probably a doctor list also. You may have to make a special trip to see one of these doctors, but . . ..
I know that tomorrow is Saturday, but try looking at the internet sites to see what you can learn. Please stay in touch. I’d love to know what you learn!

@beccamarieg I may be a little late but Welcome to MayoClinicConnect !! You’ve come to the right place to get some answers and tips on what to do next. I know I gave you some good resources, but you might also check out a comprehensive medical center or a university/teaching hospital in your area .
Both places will have great doctors and/or be able to point you in the right direction. Stay with Mayo Connect and I’m sure others will see your discussion and have some good tips for you!

Dysautonomia is an understood syndrome, but is very debillatating. It usually shows up when another illness hits. My husband has it and it’s destroying his life. I never know when he’s going to have an episode of high to low blood pressure so severe that he passes out in his feet or when changing positions. Compression socks and hydrating fluids help a lot, along with medications.

Have you tried CBD? or cbd with delta 8 or 9?

From Neurology Journals:
B12 Deficiency Is a Cause of Reversible Autonomic Failure: A Case Report (P5.111)
CONCLUSIONS B12 deficiency is a cause of reversible AF.
https://www.neurology.org/doi/10.1212/WNL.86.16_supplement.P5.111#:~:text=OBJECTIVE%20To%20report%20a%20case,urine%20sodium%20was%2063%20mmol.
From Journal of Electrocardiology:
Vitamin B12 deficiency and autonomic dysfunction
In conclusion, vitamin B12 deficiency may result in autonomic dysfunction, and autonomic dysfunction can be improved with vitamin B12 treatment.
https://www.sciencedirect.com/science/article/abs/pii/S002207360700235X
I would recommend a sublingual (under the tongue) B12 for better absorption.

@searcher1 @siosal You need to be careful when recommending medications. You don’t want to specifically tell someone to try a medicine. You are not a doctor and don’t know the person’s medical history or allergies. It’s best to say “this worked for me” or “ask your doctor about…”. Otherwise, your postings are great. It’s obvious that you put a lot of thought into what you say and really want to be helpful.

Hi
Its not medicine and is available to all in many places.
Also i didnt recommend, only asked!
I would only hope my question created curiosity.
Like you i agree non medical persons should not recommend medicines.