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Resource POTS UK Site

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks MAC for posting that. I used that website in a recent blog. They've done a great job. :)
 

MAC

Member
Thanks Cort, yes, your recent blog prompted me to do the standing test along with blood pressure measurements for me and my son (we've had CFS for 2 years). Sure enough, my average difference in heart rate from supine to standing in 10 minutes is about 35 (more than the required 30 for POTS diagnosis). And if I then continue to stand still, my heart rate and blood pressure steadily climb until by 30 minutes I feel so sick and dizzy I have to stop. My son's average difference is 47 (he's 15 and so that's more than the required 40 for adolescents). My daughter who also got CFS at the same time but has largely recovered had a difference of 20 to 25 (more than the normal difference of 10 to 15 for an adult but not enough for diagnosis).

So, armed with the measurements and the POTSUK explanation sheet for doctors, I have now got a referral to Chris O'Callaghan, the expert in POTS here in Melbourne, Australia. Chris actually spoke at a ME/CFS conference here in Melbourne last September that I attended - he is very aware of the link between POTS, Ehlers Danlos and CFS. So, I should have been on to POTS sooner but there are so many leads to follow and so often there is only enough energy to just get through the day. Checking out the possibility of POTS though is easy - you can do it at home with a watch and, for example, the free Azumio heart rate app. I think every General Practitioner should know to screen people with post-viral syndrome/ME/CFS/SEID/fatigue for POTS.

Probably POTS is only a secondary problem in CFS, but it's a problem with significant consequences and one that often seems to respond to treatment.

(Cort, I'm not sure if this comment should be here - still finding my way around the forums. Thanks again for your blogs, they bring me much hope.)
 

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