Recurrence of POTS

Hi ladies 👋🏻

Quick background. I had (and was diagnosed with) trauma-induced POTS at 18yo. The symptoms lasted for about three or so years. Then the symptoms dissipated and almost completely vanished! I was told it was quite possible I could outgrow POTS or that the nerves I had damaged in the trauma (vagus nerve mostly) had repaired itself.

During that time I was prescribed steroids to no effect, then midodrine, but by that point the symptoms were actually gone (it took a long time to get the correct diagnosis of POTS - at first the NHS doctors thought it was a heart condition because of my palpitations and they wasted a lot of time with that).

Anyway, I’m now 28yo. I’ve had 6-7 years symptom free. Until...

I hit 20w pregnant a few days ago. Suddenly my symptoms are back. The dizziness, twilight and blackouts if I ignore warning signs. The only thing that’s different this time is that the palpations aren’t so pronounced as they were, if there at all.

To add to that I live in Europe now so I need to find a new neurologist who doesn’t know my history to handle my care. And I’m concerned because what I’ve read online suggests midodrine isn’t even safe in pregnancy. So, is there actually anything I can do about this?

I hope other POTS sufferers can comment. I just want to have a healthy pregnancy and be able to stand up for long enough to complete washing the dishes. Right now I can’t even stand for that long without blacking out! 😳

PS - I did actually create a new group in Glow called P.O.T.S. & Fertility but right now I’m the only member lol.