Pots diagnosis scared

[chomer86]

Hello,
Not been on here for a while. I have recently been diagnosed with POTS syndrome after being really poorly. My heart rate was shooting to 170bpm upon standing! I started on Ivabradine which is helping with my heartrate somewhat but it still goes up by at least 30bpm upon standing then creeps back down. I also keep getting lightheaded spells & feeling weak. Since being diagnosed all inhave found are such scary grim stories and i made a massive mistake putting #pots into instagram :scared15: so scary! Im so scared everyday that im not going to be able to live a normal life or ever feel better. Im terrified. Is there anyone else on here who has also been diagnosed with pots syndrome who manages to live a somewhat normal life? I cant see any light at the end of the tunnel at the moment :weep: xx

---------- Post added at 15:46 ---------- Previous post was at 14:34 ----------

Bump

[RadioGaGa]

chomer86

Count yourself lucky (as strange as that may sound) because a LOT of diagnoses are missed and therefore the symptoms can't be treated effectively.

I assume you've read about the very rare people who get it and have to stay seated because it's so bad. As I've said that's rare and most people actually experience a resolution of symptoms over the years.

All I can say is its not as bleak as you may think and there are many many many many more worse illnesses out there.

Hang in there, follow the tx prescribed by your doctor and avoid Dr Google

Good luck

Edit

Im so sorry as I'm so bad for doing this. I read a post, comment, then re read to add more. Your heart rate is usually ~10bm lower when lying down vs standing so you're well on your way to being within normal limits. So that's good :)

[chomer86]

Thanks for replying, i certainly don’t feel very lucky at the moment. Ive been pretty much housebound for nearly 3 months. Really hoping things improve soon. Doesnt seem like there is many on here that have this diagnosis to offer some input or support :weep::weep:
Do you have much experience with this condition then? Thanks xx