Dysautonomia is ruining my life, no help from doctors

With my limited knowledge, I did not realize that a vitamin is a drug. It made me realize that I need to direct my time in a different direction, so I thank you for it. Best wishes to everyone.

Currently getting off metoprolol due to it's horrible side effects. I take CBD on a daily and that itself doesn't work for me.
I have a referral for genetic testing, but they are telling me it's a 28 month wait.
Dysautonomia, Fibromyalgia, EDS, cervical spondylosis, Osteoarthritis are my diagnosis so far. Not what type of pots I have.

Genetic testing is a 2 year wait for me to get in and see them. So, they are saying autoimmune right now.
If you look up types of dysautonomia, I fall under every symptom listed

Have you done the tilt test. Is orthostatic hypotension
the worst symptom. Did yours follow Covid last year.?

Yes. Tilt Table test was done. That's how I got my diagnosis. I go between hyper and hypotension 24/7. I got the flu 1.5 years before my symptoms started.

Are you seeing a rheumatologist?

I've seen 2 now.
Both have disregarded me and my symptoms.
But, my ANA is still positive.

I have had to eliminate two meds
as possible causes for orthostatic
hypotension. Thought it might be
causal.Autoimmune disease is
sometime the problem after medications are eliminated.
If you have any family history of
neurological disease then the neuro
clinic is best for workup for autonomic symptoms. My cardiologist just said take your midodrine and see the neurologist.
I know high /low pressure is most difficult if you have tachycardia.
I just hope we get a more solid diagnosis to deal with.My rheumatologist was good to diagnose and treat psoriatic arthritis a systemic inflammatory
condition with inadequate heart rate variability.

Do you have the seizures it causes? I do when I go into bradycardia in my sleep I bit my tongue. Woke up with blood all over my face. This is caused by the dysautonomia. Which also causes paralysis and you can die. My electrophysiologist has all ready told me what to expect. Most people live 8 years from the time diagnosed. I am on year five and tts horrible. There’s nothing that can be done,

I was having tremors in the beginning. Also would go into bradycardia when going to sleep. "Seizure like activity" was what my PCP has told me.
What you are experiencing sounds terrible. I am sorry you are going through this.
I wished we were given better options to actually live a better life.
Because all I am doing is surviving, nothing else.