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Dysautonomia is ruining my life, no help from doctors
I am struggling with Dysautonomia that just popped up last October 2024. My health and mental health are declining rapidly. My doctors are not knowledgeable with this autoimmune and I need help. I have been through calcium channel blockers, currently on a beta blocker and it is making me deteriorate faster. I am in so much pain and have been going through insomnia for the last 3 months. I've tried almost every herbal supplement for sleep and nothing helps, just makes me worse.
I'm at the point where I don't want to live like this anymore.
Looking for some insight, ideas..anything.
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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.
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2 ReactionsCurrently 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.
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1 ReactionGenetic 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
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1 ReactionHave you done the tilt test. Is orthostatic hypotension
the worst symptom. Did yours follow Covid last year.?
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1 ReactionYes. 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.
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1 ReactionAre 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.