POTS syndrome

[Min133]

Hi,

My consultant thinks I might have POTS.

I was wondering if anyone with POTS would be willing to share how it affects them and how it's being managed?

Thanks

Hi Min133. I have POTs too. Can you explain a bit more what symptoms you have and how they impact you day to day? As you might already know POTs symptoms can range from more mild to severe so options will differ depending on your circumstances.

I have so many problems I can't even begin - but with this the key things for me are

compression stockings every day,
minmum 2.5 litres water with electrolyte tablets in
Extra salt on everything
Midrodine medication
Propanol occasionally

Yes, as @Tittat50 says, the starting point is usually lots of additional fluids and salt and compression stockings. Assuming you have low blood pressure, this is to increase the blood pressure and stop the blood pooling in your legs and abdomen. There are also different medications that can be trialled, another one being ivabradine. I think it’s really important to get a specialist who knows about POTs or at least is interested to learn! There are lots of other things you can consider doing, depending how you are affected and the severity. For example, pacing your activity levels, dietary changes, and addressing any stress or trauma you might have which could be pushing your body into “fight and flight” and making your symptoms worse. You could also check out the pots UK website. Feel free to PM and all the best x

@Tittat50 have you found anything that particularly helps you? I tried a lot and I’m still struggling!

I have so many health problems, it's difficult to distinguish what's causing what.

Midrodine is a good medication. It's called a vasopressor but if you have ok blood pressure it could be problem as it raises your BP. It has a short acting time though so does only last 5 hours which is good if it's too much.

Mine is much milder now and managed just with extra fluid, salt and compression socks. When it was at it's worst I would struggle to eat large meals, often I would have to lie down midway through or afterwards wearing an abdominal binder. When I stood up my heart rate would go from under 60 to 150-200.

Lots of advice here

www.potsuk.org/managingpots/

DD and DS both have POTS as part of EDS. DD had success with ivabradine in terms of it reducing the fainting to almost nothing but she lost her appetite and was nauseous all the time. It really affected her during her GCSEs. She's come off it and is back to fainting sometimes but managing with salt, compression and fluids until she sees her consultant again. Her sit stand tests show her HR going from 60 to 150 on standing. She gets up slowly, legs crossed and so on.

DS's is unpredictable and we are still trying to get a handle on it.

My dd is 18 and has pots. As others have mentioned: extra salt, compression tights and socks, beta blockers. The consultant advised exercise, particularly yoga and pliates. Dd also swims.

Symptoms: poor sleep, extreme fatigue, heart rate going from 50 to 150 when moving from sitting to standing, sitting on the floor in the shower to wash her hair as unable to stand…

Pots Uk will give you plenty of information.When I was diagnosed at The National Hospital over 30 years ago it was rare to find a Dr who had heard of it.It took over 3 years for me to be diagnosed so I am pleased to see how much information is out there now. Good luck.

Thanks @Tittat50 for the suggestion

Just a word of caution on exercise, although this will depend on how POTs affects you. Exercise is good but recumbent (swimming, rowing or recumbent bike) is usually recommended as you’re not upright so less heart and blood pressure issues. Post-exertional malaise (doing something then crashing for hours or days after) can be a symptom of POTs so you need to be very careful if this affects you and build up really slowly. I’ve never really found any easy to implement advice on exercise with POTs or a PT who knows about it. Any recommendations gratefully received 😀

Does anyone else get terrible headaches with pots?

Both me and Dd have POTS and EDS. For us the POTS is quite mild, I mean I feel dizzy every time I stand up, but only initially and I’m used to it.