Gone to POT

It’s official, I’ve been diagnosed with postural orthostatic tachycardia syndrome (POTs). Yay /
boo / ahh! I’m going through a lot of very mixed emotions right now. Aside from now having
more diagnoses than a hypochondriac armed with WebMD and a headache I finally have a
direction to head in. The problem is that it’s not a straightforward line to follow, as of right now
we actually have no treatment plan and the doctor is a bit stuck as to what to suggest.

The struggle we face is that all POTs treatments are impossible in my current health. The
doctors thinks that I have hypovolemic POTs. A subgroup of POTs in which symptoms are
caused by not having a large enough blood volume, hypovolemic POTs is mainly treated by
increasing fluids and salt intake and exercise therapy. Whilst I have managed to increase my
salt intake (and crave salt constantly) I can’t increase my rather pitiful water intake, everytime
I try to I can’t keep it down. Exercise wise we have tried gradually introducing a stretch or two
into the day but it always causes a flare and makes me more ill than I was.

There are medications which can help, I’m starting a beta blocker (metoprolol - medicine that
slows your heart rate) and fludrocortisone (a corticosteroid used to maintain my blood pressure).

There have been developments in the gastroenterologist area too, I’m being tested for
gastroparesis (partial stomach paralysis). I’m really hoping that this one comes back negative,
gastroparesis is a very complex long term medical condition which quite frankly, I don’t feel
needs to be added to my resume. The test involves eating some radioactive eggs and having
a scan taken every hour for 5 hours to see how long it takes for your food to be digested.

I’ll update again as soon as we get the results but please keep your fingers crossed for me!