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Ehlers danlos syndrome and POTS


JBG
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I am wondering if anyone else has this combo of disorders, and has had any luck treating them together? We have tried a lot and nothing helps. All doctors say they can not help us. And we have been to sooo many...Also wondering if anyone is in Pittsburgh and can reccomend someone there...if not then well take someone anywhere!!!

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We have a list of physicians here that may be helpful if you have not checked this out:

https://www.dinet.org/physicians/

We have information resources here regarding EDS:

https://www.dinet.org/info/eds/

There have been/are many forum members here with both EDS and dysautonomia.  Many have found successful treatments.  It can take some time/trial and error to find effective treatment.  Having a good physician is important.

 

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  • 1 month later...

Hey @JBG- my partner has EDS and developed POTS.  She is on Ivabradine, Midodrine and Fludrocortisone to mitigate for the POTS, prescribed by a cardiac doctor.

Supplements wise, what has helped her the most is magnesium glycinate for the joint pain and sleep - definite marked improvement there almost in a week.   She's on CoQ10 also for heart health. We have been trying alpha-gpc to try and improve her body/brain for the gastroparesis and constipation and it seems to be working too. going to try her on some thiamine next , apparently meant to help.  As pistols says, defo best to have a good physician.

What has helped loads is time. symptoms have levelled out lots.

What have you tried so far?

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There should be some helpful content at Dysautonomia International's Vimeo channel:

https://vimeo.com/dysautonomia

(The lectures aren't organised by topic or in playlists, unfortunately, so you have to page through them to find relevant ones.)

You may have already seen this, but I find video content doesn't come up in searches very well so it's worth mentioning.

I recently saw that Brigham and Women's Hospital has a clinic for connective tissue disorders inc. EDS, and it also has a specialist clinic for dysautonomia. I don't know whether the two clinics co-ordinate care for people with both, but you could enquire and see. Not anywhere near Pittsburgh, unfortunately.

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  • 5 weeks later...

searching, "ohio Ehlers Dalos" if you are on facebook and not part of the group already, will likely populate the support group page for your region. I'm sorry that you are struggling with this. I don't live in Ohio, but I know the page for our region has had resources and doc ideas for EDS/dysautonomia that I've appreciated.

 

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JBG, your question: "I am wondering if anyone else has this combo of disorders, and has had any luck treating them together?"  My son#2 did, actually, he had 4, EDS-H, NCS, POTS and anoxic seizures.  He lived on Midodrine, Fludrocortisone, Toprol XL, and Dilanton for anoxic seizures.  His improvements to a eventual normal life were the result of a few very good Doctors.  We started out with the Cleveland Clinic and then to Toledo Hospital due to a 30 minute drive.  This was more than 10 years ago, probably near 15 years.

DADofPotsSon

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