New PoTS leaflet

PoTS UK have just published their new leaflet and it's now available to download. Postural Tachycardia Syndrome (PoTS) has now been associated with APS/Hughes syndrome, hypermobility/Ehlers Danlos and Sjogrens syndrome. Looks like we've got another 'cousin' to welcome to the 'family'!

potsuk.org/news/53

[MaryF Administrator]

Thank you for putting this on, somebody inquired the other day on a thread below regarding this relationship. MaryF

[Hidden in reply to MaryF]

Good timing then It may be that a lot of people with PoTS go undiagnosed - as usual, more research is needed ...

[Manofmendip in reply to Hidden]

Thanks for this Kate. Dave x

[Hidden in reply to Manofmendip]

Thanks Dave - hope it will help some people x

[Hidden]

What percentage of patients who have Hughes syndrome got pots may I ask, please?

[Hidden in reply to Hidden]

No idea I'm afraid - as usual there is no data out there at the moment.

[Tranquility1]

Thank you for posting this. Very informative.

[GinaD]

Fascinating! I had only vaguely heard of this. When I was in my teens and early 20s I most definatly had this. The elevated herat rate when standing, the feinting spells -- worse if I had a full stomach-- I had much of this! I would show up in emergency rooms and the doctors there would obviously resent my presence as they had no idea what my problems were. One told me I was "making it all up." "So," I responded, "I'm not reallly losing consciousness but just falling over, with the attendent head bashes and bruising, just so I can have this wonderfully entertaining trip to an ER and sit (or lie on a gurney) without any book to read or person to talk to just to attract an ER's doc's attention (which I get only after hours of waiting?) "obviously," the doctor replied. "Why don't you find something more interesting to do with your time?"

Sigh.

All this went away sometime around 30 years old after my 2 successful pregnancies. Oddly, the DVTs and vericose verin issues began in the same decade when this (presumably) POTS went away.

Something autonomic? Probably. Fascinating.

[Hidden]

Interesting you mention about vericose vein issues, Gina. I seem to recall a thread by someone who had to remove vericose vein from the pelvis. So Hughes syndrome and vericose veins are connected (and somewhat affecting autonomic function?)

[Leenalina]

I don't know if you read these old posts. But with the search I found this topic.

Yestoday I had a symptoms like this. First nausea after eating. I asked my husband to massage my shoulders, but it didn't help. After that I felt like fainting but didn't quite. I went to bed and shivered with cold. After that I slept eleven hours. Now I have temperature a bit and feeling sick. When POTS is related to APS, what does it mean? Should I see a doctor? This is second time in one month.