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Dysautonomia is ruining my life, no help from doctors

Posted by beccamarieg @beccamarieg, Mar 7, 2025

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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curiouslss | @curiouslss | 1 day ago
In reply to @swalex "I knew I had dysautonomia, a dysfunction of the autonomic nervous system, but I wanted to..." + (show)
Profile picture for swalex @swalex

I knew I had dysautonomia, a dysfunction of the autonomic nervous system, but I wanted to understand the underlying causes.
As patients, we often have to educate ourselves. Many doctors are limited by time constraints or by training that stays strictly within standard frameworks, leaving little room to explore more complex or overlapping conditions.

For years, I took it upon myself to research my symptoms—reading scientific papers and even ordering my own DNA testing. Equipped with this information, I approached my primary care physician to request specific tests and referrals to specialists.

Not all responses were supportive. Some medical professionals dismissed my concerns or reacted negatively to my persistence, yet when test results later confirmed my preliminary conclusions, there was no acknowledgment or apology.

I pushed for referrals to multiple specialists: an endocrinologist, a hematologist, and a neurologist.

The results were extensive:
Endocrinology: Addison’s disease and aldosteronism
Hematology: Von Willebrand disease type 2, Factor V Leiden, antiphospholipid syndrome/lupus, and encephalitis
Neurology: Chiari malformation type I, lumbar (L4–L5) stenosis, Tarlov Cysts and spondylitis
Genetics (DNA testing): Celiac disease

Because many of these conditions can cause extreme medication sensitivity or even severe anaphylaxis—and after enduring the painful and serious effects of Stevens-Johnson syndrome (SJS)—I now carry an allergy identification pass with me at all times.

To help others facing similar challenges, I’ve put together a summary of related articles based on my symptoms and research.
https://swaresearch.blogspot.com/2026/04/case-report-medical-summary-hemostasis.html
https://swaresearch.blogspot.com/2026/04/stevensjohnson-syndrome-and-toxic.html
https://swaresearch.blogspot.com/2026/04/spinal-cord-injury-tarlov-cysts-and.html
https://swaresearch.blogspot.com/2026/03/cold-hands-and-cold-feet-what-is-cold.html
https://swaresearch.blogspot.com/2026/03/severe-immune-thrombocytopenia-itp.html

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@swalex first of all, I hope you are feeling better now.

I admire your persistence and I too had my fair share of frustration with doctors who just don't seem to care. I understand some are just too busy. But understanding and accepting to live with it are 2 different things.

I am still on the hunt for a good doctor that can help us with our dysautonomia. If you came across any good doctors, could you please let me know?

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curiouslss | @curiouslss | 1 day ago
In reply to @tatiana987 "@seniormed Thanks for your input. I got a diagnosis of autonomic dysfunction at Stanford, but no..." + (show)
Profile picture for tatiana987 @tatiana987

@seniormed Thanks for your input. I got a diagnosis of autonomic dysfunction at Stanford, but no follow-up for explanation for 13 months. I gave up on waiting for Stanford. I tried University of Utah, which had about the same wait. This is not medicine imo. I conclude that my condition is not urgent. Once again I am alone making medical decisions, while doctors refer to other doctors who have no time.

The system is broken in many ways.

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@tatiana987 Sorry to hear you had to go through this. Interesting you mentioned Stanford... I had a similar experience a month ago with them. We tried to schedule a telehealth with their dysautonomia team, the triage nurse turned us away with the reason "it is not dysautonomia"... I mean... there's almost every symptom of dysautonomia, what do you mean its not dysautonomia? And why is a nurse doing the diagnosis?

We thought it might just be us, but looking at your experience, it might not be as isolated as we thought, unfortunately.

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tatiana987 | @tatiana987 | 1 day ago

Interesting. I grew up at Stanford and know the moral sense well there. When I discovered other places out in the real world with other ideas, I left and never looked back with any positive feeling about the place. However, I concluded that since the follow-up that happened more than a year after the exam would need to be free of law suits, according to Stanford way of thinking, my condition probably was not very serious. I think that lawsuit-based determination of urgency is probably valid at Stanford,

So if they don’t care to see you, that could be good news. Do other medical centers act this way? Can’t get an explanation equals cause to celebrate?

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tatiana987 | @tatiana987 | 1 day ago

@beccamarieg. Sorry you are going through this. My sleep problems are much improved via physical therapy, MacKensie method. I breathe better and the sleep follows on. Machine breathing did not work at all for me. C-pap is what I mean. Work on chest muscles worked.

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curiouslss | @curiouslss | 21 hours ago
In reply to @tatiana987 "Interesting. I grew up at Stanford and know the moral sense well there. When I discovered..." + (show)
Profile picture for tatiana987 @tatiana987

Interesting. I grew up at Stanford and know the moral sense well there. When I discovered other places out in the real world with other ideas, I left and never looked back with any positive feeling about the place. However, I concluded that since the follow-up that happened more than a year after the exam would need to be free of law suits, according to Stanford way of thinking, my condition probably was not very serious. I think that lawsuit-based determination of urgency is probably valid at Stanford,

So if they don’t care to see you, that could be good news. Do other medical centers act this way? Can’t get an explanation equals cause to celebrate?

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@tatiana987 I agree - lack of urgency/response is probably good news. Though, many diseases, such as dysautonomia, has such a big impact on QALY that I think patients could do with better response and interest from doctors.

Our experience with centres is it is quite varied. Stanford was the first one where I noticed the initial triage is done by a nurse AND the decision seems quite controversial. There patient reps etc were really helpful, so I feel this is more a reflection of individual than whole.

Though, for us, the additional complication is travel. When the patient is in such a situation where long distance travel is out of the question, you are down to telehealth options. And to your point about law suits, this becomes a pretty big barrier.

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