Anyone on here with POTs?

[pigbenis]

Hello everyone.
I have just been diagnosed with POTs.
I have every single tick box symptom but I've never heard of it before. For contest I'm 28F, 8 and a half stone with naturally low BP.
I started having 'blackouts' a few months ago along with crazy fast heart rate. And a tonne of other symptoms. GP wrote me a referral to cardio which was covered in my private health care at work. Without that I don't think I would've seen a cardiologist in months. They haven't done the tilt test but I've worn hours worth of ECG and bloods done and it's very obvious from the ECG that it's POTs.

I've joined a good Facebook group - wondering if there are any other POTs sufferers on MN?

For context*

Excuse the grammar errors - typed in a rush!

Hello, I do! I'm 28 now and was diagnosed at 18 but have had symptoms since I was 15/16. I have tried many beta blockers and something called ivabradine but have found bisoprolol to work best (propanalol gave me a resting hr of mid 30s-40s and I ended up in a&e! I've found it to be very much trial and error with meds and dosage.

Let me know if you have any questions!

Also, I'd just say to be careful about the Facebook groups. I've ended up leaving most of them as some really weren't helpful in terms of other people being very anxious about their diagnosis and it rubbing off on me. E.g people talking about early death when there's really no research which suggests you'll die young with pots.

I think I have got this too, I've never felt so ill, any tips on how to manage it would be very much appreciated. How are you feeling pigbenis?

When I'm feeling really unwell I drink lots of isotonic drinks and have a salty snack. It usually helps.

Make sure you keep really hydrated every day and if you're able to exercise, doing something to build up leg muscles will help too! However, I've found beta blockers to be really useful and wouldn't want to come off them now.

Thanks Sunflower, I'm taking bisoprolol, this has stopped the racing heart but I still feel very strange. I'm trying to drink lots more water and will give isotonic drinks a try. Thanks again

I was told to make sure I drank 3l a day, front loaded in the morning, and 2 teaspoons salt in the morning.

Absolutely life changing, never felt so well.

Thanks Anna, that's good news, will definitely up my water intake

I would suggest this longstanding website as an excellent source of info/help:

S.T.A.R.S.

especially their PoTS page

Thank you butterfly, will have a look at that.

Yes, along with other things like Ehlers Danlos which are associated with POTS, diagnosis via tilt table test which was horrible. Have you been checked for that, if you think you might have it? Hypermobilty type is the most common.

No meds for it, as on so many already but wear grade 3 compression socks which help a bit. Always have memories of the room going black and falling down as a kid. When I moved in with my husband, if the phone or the door went in the morning, I'd get out of bed, but be on the floor by the time I got round the other side. He'd have to jump out to catch me.

Hi @pigbenis I have POTS which is a symptom of Ehler’s Danlos Syndrome. You absolutely need to stay extra-hydrated and I second the use of electrolyte drinks. (You can get some rather pleasant sugar-free ones these days too.) Adding extra fluid helps regulate blood pressure and the electrolytes are helpful for arrhythmia issues (at times). Other things that help are increased muscle tone, avoiding hot places (especially saunas, hot baths, etc) and compression stockings. Circulation is often not entirely understood. Your heart pumps blood to extremities, but it is actually the movement of muscles that help it to return to the heart. Blood flow/muscle/BP
I agree that staying away from FB groups is a great plan. They often attract crusaders who exaggerate how unlivable their lives because they perceive people as being unwilling to help them instead of focusing on how to take responsibility for improving things to make their own lives better.

My 14 year old dd is currently being investigated for this, she had a 3 day heart mentor the other week, an appointment with a cardiology nurse next Fri and an appointment with a cardiologist next month.
She has low blood pressure and keeps getting a “blackened” vision when she stands up.
Fraaahnces it’s funny you mention EDS as I’ve been looking into this recently and believe I and many members of my family have this. I have other chronic health issues which I wonder may be related. Dd is very bendy and has to click each joint every day, throughout the day in order to feel comfortable. GP dismissed this as a possible joint hyper mobility issue and said the clicking was just a habitual thing but now I am starting to wonder?

monitor!

@JustlookingNotbuying - sounds suspiciously familiar to me… If you have a family history it might be worth getting a referral to a rheumatologist. (Or rather, trying to. Doctors can be somewhat reluctant!)

@Sunflower07 im also 28, not been diagnosed as of yet.
my dr refered me for a heart monitor which tbe cardiologist has requested 3 weeks i have to wear it for?
mine all started either from covid or pregnancy. So im scared to have another :( have you had a baby whilst being diagnosed with pots? Xxx

I'm sorry you're going through this. :(

It's been a long old slog but I've finally found a mixture of meds that work. I'm in verapamil and flurdrocortisone (a steroid) which keeps my blood pressure up and my heart rate down. I still have a very tachy heart and it's taken a LONG time but I no longer have black outs. Some cardiologists don't recognise this condition.

Go onto YouTube and search for Dr Nick Gall. I'm under him now and he has changed my life! Has to pay privately as hes at kings but he is a POTs specialist. You need to push for answers but also drink PLENTY of water. I drink a full glass of water every 1-2 hours. Compression socks and also stand up slowly. I didn't have to wear a monitor as I have a loop recorder fitted in my heart. But pots can get better on its own. It'll go through phases. But they are happy for me to try for DC2 this year and the meds I'm on are safe.

Good luck and if I can help in anyway I will!

And I k ow it's scary when you have bad episodes but pots isn't life threatening or dangerous. It just feels like it when it puts your body into fight or flight mode. But keep in mind it won't harm you. Or harm your heart and as time goes on you'll get used to it but you really have to do your bit too by gentle exercise, water, compression socks etc

@pigbenis im soo glad your hear your not having black outs :) and also that you are better!! May i ask how much you have to pay for that dr because i may need too . I will see how i go with the monitor and what they say!

ooo thats soo good to know that the medication is safe in pregnancy!!!
i want another baby but i am sooo scared as i was sooo ill with my first.

im hoping the monitor will pick something up for me.

Ive been like this since 2020 and i have had enough! You never realise how important your health is until your sick. Xx