Eds And Pots

[MomtoGiuliana]

Can anyone provide a link to any information about the meds that work best to treat POTS caused by EDS? I am curious specifically to know if SSRI's are particularly effective. A low dose SSRI makes a huge difference for me.

I mentioned in some earlier posts that my specialist does not think I have EDS or should be tested for it. I don't know if I should push for a referral for testing or not. I feel I need to provide him with information/evidence before I make another request for a referral.

Also, I am confused about the use of the term "vascular EDS". I thought EDS-induced POTS had to do with vascular stretchiness--is that not the same thing as vascular EDS? Can you have this "stretchiness" without the elevated risks of aortic rupture, etc.?

Thanks,

Katherine

[mkoven]

i highly recommend the www.ednf.org website for clarifying. There are different types of eds--there is something called vascular eds, which is different from having vascular issues with other (more common) types of eds. Vascular eds is the one of the rare forms that they have a test for, and the most dangerous. While the risk for aortic dilation and dissection is much higher for vascular eds, it is still somewhat of an an issue for the other types. Dr. LavaLlee, an eds specialist, recommends all eds folks have regular screenings of their aorta for any enlargement.