Treatment options for Dysautonomia

Hello @cdhouns .. how difficult to have your daughter so ill, but i am glad you found Mayo Clinic Connect. We’re a group of patients and patient’s caregivers who try to help each other with resources, information, and tips we’ve learned from our own health journeys. But were not doctors so can’t diagnose or prescribe medications.
Here is a link to some information i found. Have you read this?

DINET Dysautonomia Information Network

Your daughter was diagnosed with dysautonomia in 2017—did any of the doctors start treatment?

As is typical with this diagnosis, she has only received symptomatic treatment. If her stomach hurts or she experiences cyclic vomiting, gastro rx zofran, reglan, etc. If she gets a migraine, then migraine meds. She actually works for Univ of Utah scheduling medical specialities. There is no coordinated treatment and a 3 year wait for Dysautonomia Clinic. Yet she continues to suffer

As is typical with this diagnosis, she has only received symptomatic treatment. If her stomach hurts or she experiences cyclic vomiting, gastro rx zofran, reglan, etc. If she gets a migraine, then migraine meds. She actually works for Univ of Utah scheduling medical specialities. There is no coordinated treatment and a 3 year wait for Dysautonomia Clinic. Yet she continues to suffer

I know you said there is a 3 yr wait, but i cant believe it!! Is she on the wait list? Have you considered going elsewhere? A large medical center or a university teaching hospital? If you think you might consider Mayo Clinic, here is the information for the campuses in Arizona, Florida, or Minnesota .
http://mayocl.in/1mtmR63
Is this something you and she might think about?

As is typical with this diagnosis, she has only received symptomatic treatment. If her stomach hurts or she experiences cyclic vomiting, gastro rx zofran, reglan, etc. If she gets a migraine, then migraine meds. She actually works for Univ of Utah scheduling medical specialities. There is no coordinated treatment and a 3 year wait for Dysautonomia Clinic. Yet she continues to suffer

Becky, Thank you for your concern. Yes we have considered Mayo Clinic but have read there is a waiting list there also. From reading other posts on this link, I realize that most have the same experience. Lots of tests, meds and try this or that, but no definitive answers or treatment

Becky, Thank you for your concern. Yes we have considered Mayo Clinic but have read there is a waiting list there also. From reading other posts on this link, I realize that most have the same experience. Lots of tests, meds and try this or that, but no definitive answers or treatment

Becky, Thank you for your concern. Yes we have considered Mayo Clinic but have read there is a waiting list there also. From reading other posts on this link, I realize that most have the same experience. Lots of tests, meds and try this or that, but no definitive answers or treatment

Hello @cdhouns,

I have been reading the posts about your daughter's difficult symptoms. I can't imagine how hard this must be for you and for her. I see that a couple of people have recommended a second opinion at Mayo. At one time, I felt as you do, that every hospital system is about the same. However, from personal experience (and that of others who have posted on Connect), I have found that not to be the case.

Research-oriented and multi-disciplinary medical facilities like university medical schools and facilities like Mayo are really different in the way they approach hard-to-treat problems. I've had three surgeries for a rare type of cancer and started off at a relatively well-known hospital in my community. After two surgeries there, I went to a university medical system (about an hour's drive from me) for my third surgery and what a difference it made!

If you can obtain a second opinion for your daughter at a research-oriented medical facility, I would like to hear from you.

Will you post again if you decide to give this a try?