Pyridostigmine

I’ve been in the long process of waiting for an appointment with a POTS/dysautonomia specialised cardiologist after years of cardiologists telling me I’m fine (seeing them in late May).

My neurologist (migraine/epilepsy) has been trying his hardest to help in the meantime but admits that his knowledge set and prescribing capacity are limited. It wasn’t until earlier this week when I was explaining my worsening symptoms and he saw how bad the bruises were on my legs were from fainting/falling that he said he’s going to try and think outside of the box as I’m obviously going downhill quickly. On top of my existing beta blockers, he prescribed me very low dose Pyridostigmine and then had the plan for me to start on Fludrocotisone once I’d tapered up on the P.

First day of P, I felt fantastic. My chronic pain had actually disappeared, I could feel strength in my legs and my chest pain was near non existent. The next day, my heart rate started climbing to extremes it’s never been whilst I’ve been on beta blockers. My PCP had told me that if that ever happened, to take some extra beta blockers. I did that and it still kept climbing, pain/tightness started moving from my chest to up my throat and into my jaw. I did an ECG on my Apple Watch which came back with an afib reading for the first time ever. I called an ambulance, they caught the tachycardia on an ECG but no other abnormalities. Of course once I got to the hospital, my resting heart rate plummeted to the 60s which it NEVER sits at (usually 80s) but they still ran every test under the sun and ended up just saying “a POTS flare. Very unlikely that the new medication could cause that type of reaction so continue taking it but talk to your neurologist tomorrow”.

My neurologist instantly took me off it when I spoke to him. I’m so disappointed considering how fantastic it was making me feel and how all the other doctors told me that there shouldn’t be a reaction like that at all. I’m wondering if anyone else has had this type of experience with it? Holding out hope that maybe it was a bad flare with a few triggers happening at once (including running out of my usual electorates), and maybe the cardiologist will be willing to give it another go