Dysautonomia is ruining my life, no help from doctors

If you have an underlying autoimmune disease or signs of chronic inflammation that may be causal. Have you been tested for Parkinson’s?
Autonomic dysfunction can precede the onset of motor symptoms by
years ahead.
A few major cities have an autonomic laboratory with a specialist interested in autonomic disease. There are important tests for possible pathology.
Ask your neurologist about a SynOne test and anti cholinesterase antibodies.
There is expert team at Mayo Clinic. Neurologists are swamped with POTS patients and many months of backlog waiting for an appointment.
I am not expecting a cure just answers about the cause if there is a diagnosis.
Hoping to find an experienced doctor with the best treatment.
I don’t want another doctor inferring my age is most of the problem.
Age is not a disease.

@beccamarieg my husband suffered with dysautonomia which started with a severe UTI three years ago. It was recognized by his cardiologist and care team, but each medication they tried had no lasting effect. He had it until he passed away (Prostate cancer), with no relief. Unfortunately, it made his final years very difficult for us both.

@seniormed I don’t have an answer for you, I just wanted to tell you to keep pushing and asking questions! Hopefully, you can find a doctor to help you. I do have Long Covid and had 7 Stellate Ganglion Block injections that did help quite a bit with my PTSD/Anxiety. I was jumping out of my skin and just walking was difficult due to having body tremors, which have almost vanished. If I overdo it my body tells me by having tremors, so I try to never stay up or out late as I will have trouble sleeping. It’s sad I have to live like this as I’m only 69 years old and feel like I’m 90 some days!

@reets70 The only medication that helped me manage dysautonomia was cetirizine, which I took at night (30 min before bedtime) for several months.
Other antihistamines didn’t work well for me.
While it’s not a miracle cure, it helps keep cytokine levels down, allowing the system to slowly begin healing.

@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.

@swalex
whenever i hear cytokines, i take quercetin.
https://pubmed.ncbi.nlm.nih.gov/39245773/

Dysautonomia is a neurological disease.
Due to the nature of what it is affecting depends on your specialist. Mine affects my heart and kidneys. I see a kidney doctor and cardiologist along with electrophysiologist (for the arrhythmias). There are only three drugs for the heart but the problem being once the nerves are affected it doesn’t work well. metropolol succinct and I am using IVIG for the heart panzyga. I have noticed a huge difference in the heart. As far as blood pressure problems and arrhythmias. The electrophysiologist diagnosed the cardiac autonomic neuropathy gave me 8 years to live and half of it’s gone.
It’s in my records by the cardiologist. According to neurologist starts out as small fiber neuropathy.
https://my.clevelandclinic.org/health/diseases/6004-dysautonomia

I have a neurologist who specializes in dysautonomia.
We are still working out the underlying cause/disorder, however, it is nice to work with the Doctor who fully understands the dysfunction.
He is in the St. Louis area. We drive about an hour to my appointments. I also have adrenal insufficiency, which has many overlapping symptoms as the dysautonomia. Have you been tested for adrenal insufficiency? You can get blood work to check your cortisol levels. I completely understand the pain you are going through and the frustration we just want to get our lives back.

@artemis1886
Thank you for sharing. I have similar heart symptoms and your summary is helpful.
Hugs.

We all could learn and benefit from this website.
The Dysautonomia Project is the global leader in dysautonomia education with a mission to educate patients, healthcare providers, and communities.
https://thedysautonomiaproject.org/