Dysautonomia

Hi @julbpat, I posted this is another similar discussion that might be helpful.

— Dysautonomia Support Network: https://www.dysautonomiasupport.org/
— Southeast Provider Directory: https://www.dysautonomiasupport.org/southeast-provider-directory

Here is a research page I found for familial dysautonomia.
— Treatment Breakthroughs From The Fordham Research Lab: https://fdnow.org/breakthroughs/

Hoping you find some answers at your upcoming appointment. Looking forward to your update.

Hello Julbpat,

I am sorry that you are facing these health challenges. I have dysautonomia also, linked to my joint hypermobility/Ehlers-Danlos. There are a growing number of articles recently about the higher incidence of neuropathy among those with EDS. I also notice that when I am having a flare-up of my JHM, my neuropathy becomes worse. Your two conditions may be related. However, recognition of the link has not led to treatment options.

I wish you the best on your journey.

Thank you John for all those helpful links. Last year, my neurologist diagnoed me with SFN and Dysautonomia (Orthostatic hypotension). The doctor ordered 30-40 HG compression, abdominal binder and low dose of mestinon (pyridostigmine). I would greatly appreciate any helpful comments any of you could offer that answer any of the following questions:
1.) Any suggestions on what abdominal binder to buy? I found the Leuder brand to be uncomfortable.
2.) Any recommendations on which brand(s) of compression garments to wear and where on-line to buy them? I've tried Jobst toe-less pantyhose (purchased them on-line and through a local medical supply pharmacy store). The Jobst knee-highs kept falling down to my calf.
3.) Does Spanx work like lower-grade medical compression socks/pantyhose?
4.) Anyone have experience taking mestinon (pyridostigmine)?
5.) Do you know of any links to dysautonomia exercise videos?
6.) Any recommendations on filing an appeal to the insurance company to cover IViG?

Thanks for your helpful input. I wish you all many years of living full lives in less pain. Thank you for your support.

Here is an exercise video YouTube channel that might be helpful:
https://www.youtube.com/@dysautonomiamovement/videos

These are perfect. Thank you, thank you, thank you

Regarding abdominal compression, I read that Spanx (or less expensive equivalent) will work.
Knee high compression socks - I ordered some from Amazon. The reviews are very helpful, and you can post questions. Also can return them! I ordered toe-less in a fun stripe!

So my appt was a long 4 hours, but very thorough. I saw Dr Paula Moore in Birmingham, Al.
I passed all the tests (cardiac echo, treadmill, tilt table) but didn’t do as well on the Vitalscan portion. This had to do with different breathing patterns, standing and sitting, while being monitored. I knew I wasn’t going to “pass”, because I watched my bare foot turn purple after the Valsalva maneuver portion. Hmm.
Dr Moore gave me some instructions, having to do with water intake, pre-rising activities to start my morning better, compression knee-his, etc.. She also said something surprising, which is that all SFN patients have Dysautonomia by definition - problems with autonomic function, which is mediated by small fiber nerves.
I am waiting to get a full written report so I can get the full picture. It was a lot of information to digest. But I don’t have POTS, and don’t have severe orthostatic issues.

Very frustrating trying to get any help with wildly variable blood pressure. Stanford Neurology tested me, collected their fee, and was not able to give me a follow-up explanation for 13 months, which would be in January 2026. I was able to read and consult only Dr. Google on what the notes said. Stanford called my condition dysautonomia. They said this:
« Qswear responses reduced in lowerextremity. Valsalva ratio reduced. Blood pressure drop in phase II Excessive, in Phase IV responses absent. Heart rate range to deep bresthing and expiratory/inspiratory ratio reduced. Tilt table normal. »

The cardiologist who ordered the test would not interpret it. Neither would my PCP, my neurologist, or anybody else. Today my blood pressure expert said there is no treatment, Dr. reddit says there are ways to fix the problems like by eating more salt. Oh but wait, the cardiologist says to eat less salt. If anybody wants to observe a dysfunctional medical corporation, I recommend Renown Reno, Nevada. They are diligent when it comes to billing.
I found Stanford’s refusing a timely explanation of my dysautonomia irresponsible, but in trying to comprehend their actions, I guessed that maybe they meant my condition was either not that bad or not treatable. It sure would be nice to know and to have more than Dr. Google on my case. One positive thing about Dr. Google is that it does not take long to get his opinion.

It is may be difficult to find a neurologist expert interested in autonomic disorders to interpret your studies. It often require your primary physician,
neurologist and cardiologist to help with diagnosis and treatment options. Dysautonomia can be caused by
multiple systemic diseases.
Find a screening test you can take to document and
quantity your symptoms. It has 31 questions to answer
and score. The Compass-31 test can be found online and
some websites can help compute your symptoms score.
If it is more than average you should than have enough evidence with Stanford results to find another accessible neurologist.
I was not satisfied with my local Neuro consultant and
found it worth waiting to get accepted at Mayo
with an autonomic group.

Thanks for yr reply. I do need a new PCP.

My neurologist is impressive in his forceful, difficult decisions. He suspended my drivers’ license which was horrible for me, destroying my ability to function normally and my self-confidence, but I got the license back, made him show me evidence and came to appreciate his forceful actions. He was right in a way to force me to diagnose myself and take action. His style is better than just referring patients and ordering more tests.

I will look for that Compass-31 test. Thanks.