Dysautonomia is ruining my life, no help from doctors

Hi
I’ve been having neuropathy in my feet for one year and my daughter has dysautonomia and has been tested for POTS, negative. I was just tested for B6 toxicity and had a high level after taking a multi vitamin for years containing 25 mg of B6. We have both just stopped the multi. My understanding is it can take up to a year for nerves to heal.
Good luck

I’m new. Just came across this. I have had dysautonomia for at least 20 years, undiagnosed. I live in the metro Phoenix area. Doctors don’t know how to deal with and/ or don’t care. In 2006 and beyond I had hypercalcemia for years. No doctor cared to find out why. Then stated having super bouts of high blood pressure and very high heart rate. My bp at the er was 183 over 117, hr 130. They told me to go home and make an appt with pcp. Calcium was 11.4 when high end was 10.2 I had horrible back pain, insomnia every night, panic attacks, and severe headaches. My pcp wanted me to see phychiatrist to find out why I thought I was sick when nothing was wrong with me. Then I developed fatigue that was so severe I could no longer walk our dog or do housework. Saw a endocrinologist for 2 years and she finally said, sorry can’thelp. Took 6 yrs to feel like normal, well almost. Severe lumbar problems, injections, ablations. Now 20 years later, actually it was 18yrs since I’ve been sick again. I am the one who diagnosed myself, when bp started plummeting, like down to 60 over 40! My cardiologist sent in prescription for midodrine and see you in 6 mths. Yeah! Midodrine at only 2.5 mg and not strong enough to stop bp from falling. New cardiologist only cares about my heart. There is a Mayo clinic here, actually 2. Their only specialist left a few years ago and the never got another. I read a lot about dys. And am pretty much on my own. I am getting help from my new pcp that I got this fall and my husband and family. Sorry this post is like a downer, but I’ve gone to so called specialists that say they treat dysautonomia, but they really don’t know what they are doing. I’m long time retired and Medicare is awesome at paying for testing . One can survive this, but just that - survive. I was diagnosed with Lupus 1-1976. I have survived that and will survive this!

@77phxarea welcome!

First, your hypercalcemia. Have you had a parathyroid removed?

I had it also. My blood calcium level went to 11.1 so I had a parathyroidectomy in 2008.

Before I had the parathyroid gland removed, I felt so sick all the time. Much of what you describe was how I felt.

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

@SusanEllen66 everything checked out fine, even went to Mayo Clinic for consult. Hypercalcemia finally stopped after stopping Fosamax which caused jawbone necrosis. Thanks for the interest, I did have total thyroidectomy because of nodules caused from Hashimoto’s caused from lupus. I too, thought it was parathyroid, and considered going to a specialist in Florida, thinking the tests here were wrong. The body is an amazing thing and you just never know how complex.

beccam,
"The stellate ganglion nerve bundle carries sympathetic signaling to many body regions and organs, including the head, neck, upper limbs, thymus, heart, lungs, lacrimal gland, salivary gland, thyroid gland and pineal gland. Injection of local anesthetic near the stellate ganglion can block activity of the entire cervical sympathetic chain,"

You might try a stellate ganglion block. I is thought to reset the autonomic nervous system It has been commonly given for PTSD, for hormonal deficit hot flashes and excessive sweating. But has also been trialed for dysautonomia resulting from long covid and Lupus.
The procedure is a simple injection under fluoroscopy without setation that takes abou 15 minutes. Usually in the first procedure the injection is given on one side and the second on both sides. It may require multiple injections over a period of months.
Pain specialists are the most practiced in giving the block.
I hope you find some good medical help.

@gently Have you had a stellate ganglion block? Or someone you know?

@77phxarea Welcome to Mayo Clinic Connect! I’m glad you found the site and have been able to ask your questions. MCC operates on the members telling others how medications or a procedure or an illness affected them and how they are living with a disease. Everyone is different and reacts differently to medications so it is left up to individuals and their doctors to treat them as they think best.
Can I ask how you found Mayo Clinic Connect?

@77phxarea
I went to Mayo Rochester which has an Autonomic Neurology team . I was evaluated at age 78.
The complete thorough testing was well orchestrated over
4 days. The billing was reasonable and covered by Medicare.
I was informed in advance about one important uncommon test which was not covered. You could not get a better consultation anywhere else in the US. Worth the travel.

@becsbuddy
I had a stellate ganglion block fifteen years ago with Dr. Lipov in Chicago. https://stellamentalhealth.com/providers/eugene-lipov-md My mom was experiencing sudden, unusual anxiety and I wanted to know what the injection was like before advising. For a thousand dollars I had a very pleasant experience. While I was juggling lots of concerning situations, I didn't have anxiety or any other excuse for the treatment. I immediately felt what I can describe as a physical lightness of being. Still on the table I thought of each of the situations that needed resolution and felt unutterably capable.
I suspect that for each of us life is fraught enough to benefit from this block. For some the benefits are so much greater than they were for me. There is a wonderful post on connect from another connecter who'd experienced the marvel of multiple stellate ganglion blocks. I'll look for it.
I"ve wanted to thank you for liking all us here so much.