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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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@becsbuddy I was looking at something on the Mayo Clinic website when the Connect came up as a side bar!
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1 Reaction@77phxarea I did have surgery in Florida by Dr Norman.
I wish you all the best. BTW, I am also in the Phoenix area.
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1 ReactionI’m so happy that you continue to seek answers. A long term RA patient, I suffered with dysautonomia for a couple of years,that caused a rapid heart beat, sweating, and periodic fainting. I was restricted from driving for several months. I had multiple appointments with my rheumatologist, took b12 sublingual tablets then shots, went to an osteopathic dr, was tested for POTS, and I cannot even remember what else. After many tests and doctors, it was ultimately determined that I, very infrequently, suffered atrial tachycardia. A procedure, cardiac ablation, truly fixed my problem. We are all different. So my point is, you are so right to keep looking for answers. I agree that teaching hospitals are an immense resource to us when we fail to find answers elsewhere. Please Keep looking for your answer.
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1 ReactionLow dose Naltrexone is susposed to be helpful for this condition. Please look it up and read about it. Also known as LDN. Our thoughts are with you.
Do you have tha BP problems low/high, arrhythmias too slow aka bradycardia/too fast aka tachycardia. The reason I am asking went to cardiologist did a one month holter monitor test. It showed the arrhythmias. I was then sent to a electrophysiologist that diagnosed me with cardiac autonomic neuropathy aka CAN which is part of dysautonomia.
@artemis1886 yes, I too have a lot of cardiac problems. I have very high bp 200’s over 100’s, and as low as 60/40 5 different times. My heart rate does the same. I am 77 and have 3 stents. I have all kind of issues with dysautonomia. Slow gut motility, causing severe constipation, which remedy came in form of magnesium! Severe gerd, hiatal hernia, all kinds of back problems that the dysautonomia only exasperates. Have all kinds of doctors, but not much relief. Hope you get more answers than I get.
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1 ReactionHere's a few meds my lovely neurologist at the Mayo autonomic disorders program and I discussed that I would recommend looking into, depending on your specific causes of dysautonomia and comorbidities:
- guanfacine if you have brain fog/ADHD and hyperadrenergic subtype and tend towards high bp (which it sounds like you may not have given your poor response to beta blockers)
- pyridostigmine if you have dysmotility/GI issues/constipation, helps with venous return
- midodrine if you have hypovolemia and tend towards low bp
- mirtazapine--not exactly sure how it helps with dysautonomia but good if you have GI issues too and could help with depression/anxiety. also puts me to sleep
- ivabradine if your HR is too high after beta blockers
- B12, folate, iron, D, calcium, etc. only if you're deficient
- of course tons of salt and water and compression as you're probably very familiar