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kisekis

POTS caused by EDS?

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How many of you have pots and also eds?(the new criteria not the old. hypermobility, joint pain, elastic skin, muscle issues, athropic scars, vision problems, spine, bleeding bruisings, tmj, etc which all caused by collagen issues eds)

 

What im confused about its been taught that eds can caused pots(stretchy blood vessel) but now they said eds cant caused pots?

 

The NHS website still write eds can cause pots but the official new criteria of EDS said no correlation between eds causing pots.

so im confused??

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There are/were 4 who in our family that have been diagnosed with H-EDS but only 2 of those who have/had POTS!  No correlation, What!  But to clarify there are probably more than 8 with H-EDS but only 4 who have real obvious signs and 2 confirmed.

DADofPotsSon

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My cardiologist said he thought my hypermobility was contributing to my POTS along with my autoimmune issues and CFS /ME . 

All I have read and heard says EDS often goes with POTS . In my opinion there seems to a lot if patients with both ! 

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20 minutes ago, dancer65 said:

My cardiologist said he thought my hypermobility was contributing to my POTS along with my autoimmune issues and CFS /ME . 

All I have read and heard says EDS often goes with POTS . In my opinion there seems to a lot if patients with both ! 

Interesting i got positive low ANA test. Ive seen other people with pots got low ANA test.

If collagen issues caused stretchy, fragile skin, easy bruising. its likely possible it can caused stretchy blood vessel 😕

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I have H-EDS, POTS, GI probs and MCAS and a whole load of other EDS things. The EDS is the cause of the POTS I have been told by my autonomic specialist. The collagen defect has caused both nerve damage and vein damage in my body leading to POTS. EDS collagen defect manifests itself differently in each person, so some may have EDS but not POTS, but then might have others things. 

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12 minutes ago, misseb said:

I have H-EDS, POTS, GI probs and MCAS and a whole load of other EDS things. The EDS is the cause of the POTS I have been told by my autonomic specialist. The collagen defect has caused both nerve damage and vein damage in my body leading to POTS. EDS collagen defect manifests itself differently in each person, so some may have EDS but not POTS, but then might have others things. 

How do you know you have vein damage?

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15 hours ago, misseb said:

I have H-EDS, POTS, GI probs and MCAS and a whole load of other EDS things. The EDS is the cause of the POTS I have been told by my autonomic specialist. The collagen defect has caused both nerve damage and vein damage in my body leading to POTS. EDS collagen defect manifests itself differently in each person, so some may have EDS but not POTS, but then might have others things. 

Nerve damage by eds, how? 

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I have POTS and since then have been diagnosed with HEDS after putting together a collection of previous medical/surgical issues & features associated with poor collagen over my lifetime.

I saw a geneticist for the HEDS diagnosis and she definitely felt that dysautonomia was one of the features of EDS. 

The thing is whilst I understand that EDS can cause lax blood vessels and pooling (my dad has really bad varicose veins and an aortic aneurism), I am not sure this fully explains the orthostatic intolerance in my case as surely veins would gradually stretch out over time, whereas my POTS onset was extremely abrupt at age 34 & was triggered by a forceful Valsalva. 

I am also not sure how EDS could cause nerve damage (unless nerves are being stretched/pulled out of place by general tissue laxity). Also I have no other features of nerve damage such as weakness, numbness or neuropathic pain. 

B x

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