Does anyone else have POTS?

[Notcookie]

My HR goes from 60 to 120 when I stand up. I've had 24hr ECH which showed sinus tacchycardia. Tilt test was negative to cardiologist said it wasn't POTS but orthostatic intolerance. But the nurse told me I had all the symptoms of POTS and that the tilt test isn't conclusive. So I am pretty much assuming I have POTS.

Had the symptoms since I had covid in March 2020. The symptoms get better and worse. Much worse when stressed or anxious (like now!).

I take 10mg propranolol when needed but it just takes the edge off really. Also get pulsatile tinnitus.

Just wondering if anyone has advice on what has worked for you? Also how to be less hypervigilant about your HR as I feel like I'm constantly aware of it which then make the anxiety worse and then it becomes a vicious circle. I keep telling myself it's harmless but it doesn't feel harmless when you're doing nothing and your HR is 120 and you can hear it in your ears!

Would love to know I'm not alone.

Similar situation so very keen to see responses.
The cardiologist told me it wasn’t PoTs before I had even had the tilt test, which I did feel I’d failed at as it was ‘normal’, although no follow up yet. The nurses were pretty dismissive of me tbh but the GP that referred me is convinced I have Pots. I can’t move around without keeling over if I don’t wear compression stockings as my BP plummets and my HR raises. I take propranolol (20mg) a couple of times daily and have electrolytes daily (the sports type tablets you dissolve in water and drink). It’s been nearly 2 years now and I’m no further along with any help or advice at all.

I’m in a similar position. Didn’t get tilt tested until they’d already put me on Fludrocortisone. I now manage well most of the time, but struggle when stressed or if I’ve got a cold, or am overtired.

Remembering to eat and drink regularly and not rush help (sometimes easier said than done).

Have you gone onto the Pots UK website. There's lots of information about how to manage the condition on there and they do run peer groups to deal with the condition. It might help to share your concerns with someone?

It must be very frustrating for you but I think the NHS tends to prefer not to diagnose people with conditions as much as possible - ADHD being a similar case - to reduce the demand for resources. It doesn't help though when you are struggling...

I take 10mg of midodrine 3 times a day and it’s been a game changer, alongside bisoprolol and ivrabradine. Also, up your fluid intake to at least 3 litres a day, increase your salt intake too. On bad days, electrolyte drinks are a game changer. Compression leggings/socks help as well.

Remember to stand up slowly whenever possible, raise the head of your bed with some books, and be gentle with yourself, it can be frustrating but it’s not your fault ❤️

Plenty of oral fluids and increased salt intake can help ( if suitable for you to do this). Midodrine is sometimes used but is usually only prescribed by a specialist as it is not licensed in the UK for the treatment of pots.

Thanks for the responses. Interesting that others have seen a reluctance to diagnose as well. It seems to affect women a lot more than men so I wonder if that is part of the problem.. For example I felt like the cardiologist took one look at me (slim, fit, look young for 45) and decided there couldn't be anything wrong with me as his waiting room was filled with overweight elderly men! He made a comment about it.

Does anyone else get anxious when their HR climbs? I know it isn't meant to be dangerous but it feels horrible and makes me feel physically anxious.

Doesn't help that both GP and cardiologist were keen for me to come off beta blockers if I could. So I feel bad taking them and try to avoid it.

Yes to salt. I find caffeine helps in a crisis moment too.