1. < Autoimmune Diseases

Treatment options for Dysautonomia

Posted by Neeci @neeci, May 5, 2016

In 2011 I was diagnosed with dysautonomia. It is not POTS, but another form. I would love to converse with others to find out their form of treatment. I've been told there is no cure...but I have hope.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

cdhouns | @cdhouns | Aug 19, 2021
In reply to @becsbuddy "Hello @cdhouns .. how difficult to have your daughter so ill, but i am glad you..." + (show)
@becsbuddy

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?

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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

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3 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 19, 2021
In reply to @cdhouns "As is typical with this diagnosis, she has only received symptomatic treatment. If her stomach hurts..." + (show)
@cdhouns

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

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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?

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 25, 2021
In reply to @cdhouns "As is typical with this diagnosis, she has only received symptomatic treatment. If her stomach hurts..." + (show)
@cdhouns

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

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@cdhouns I’m just checking to see how things are going for your daughter. She’s just too young to deal with all of these medical problems and children! Have you been able to contact a major medical center or Mayo Clinic?

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cdhouns | @cdhouns | Aug 27, 2021
In reply to @becsbuddy "I know you said there is a 3 yr wait, but i cant believe it!! Is..." + (show)
@becsbuddy

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?

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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

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6 replies
bustrbrwn22 | @bustrbrwn22 | Aug 27, 2021
In reply to @cdhouns "As is typical with this diagnosis, she has only received symptomatic treatment. If her stomach hurts..." + (show)
@cdhouns

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

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@cdhouns I can't imagine the pain you are going though but I can empathize as i have the same issue with my autoimmune disease. My prayers are with you but unfortunately the healthcare system is what it is.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 28, 2021
In reply to @cdhouns "Becky, Thank you for your concern. Yes we have considered Mayo Clinic but have read there..." + (show)
@cdhouns

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

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@cdhouns i know that many people want to be seen at the Mayo Clinic.

https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Do you think your daughter’s doctor might make a referral to Mayo for her?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 30, 2021
In reply to @cdhouns "Becky, Thank you for your concern. Yes we have considered Mayo Clinic but have read there..." + (show)
@cdhouns

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

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Cdhouns, different departments at Mayo Clinic have different capacity and availability. I wouldn't assume there is a waitlist. If your daughter is interested in seeking care at Mayo Clinic, I recommend she call to find out about availability. Here's the contact information http://mayocl.in/1mtmR63

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 31, 2021
In reply to @cdhouns "Becky, Thank you for your concern. Yes we have considered Mayo Clinic but have read there..." + (show)
@cdhouns

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

Jump to this post

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?

REPLY
1 reply
cdhouns | @cdhouns | Sep 1, 2021
In reply to @hopeful33250 "Hello @cdhouns, I have been reading the posts about your daughter's difficult symptoms. I can't imagine..." + (show)
@hopeful33250

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?

Jump to this post

Thank you for your support.

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yellowdoggirl | @yellowdoggirl | Sep 5, 2021

I am sorry people have to be so stuck with this! I feel stuck, too, and ignorant so I hope to learn more about where to begin.
I already have pernicious anemia, celiac disease, and UCTD.
My questions: what kind of doctokór diagnoses dysautonomia and how do you find one?
I do live near large academic medical center.
COVID test tomorrow for a tilt table test on Wednesday.
Thank you and I wish you all the best.

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