POTS recovery how long?

[blackcandle]

My 21 yo dd has had POTS for two years now. I want to know if anyone has recovered from it and how long does recovery take?

My dd has pots and eds. she is much better than she was but without fludrocortisone and then midodrine I don't think she would have made it out of bed. Building strength with floor exercises has helped. Any viral infection hits hard. If you're anywhere near Coventry try and get a referral to Shamil Yusuf as he has a pots nurse specialist in his team

@blackcandle I get Slow Sodium on prescription but you can buy it over the counter. There's been a nationwide shortage recently so I would suggest looking online. I take 3 tablets first thing with my 500ml of water (before I get out of bed) and another 3 at lunchtime. I found these made a huge difference to me, there was an overnight improvement in my dizziness and fatigue.

Compression really needs to be waist high, knee high doesn't do much. I wear these every day (need to be class 2):

https://www.mediuk.co.uk/shop/duomed-soft-compression-tights.html

A good physiotherapist who understands POTS is also invaluable. If you're anywhere near York I would highly recommend mine. Finally, if she's still struggling, I would recommend booking an appointment with Dr Sanjay Gupta. The NHS wait is ridiculous but given she already has a diagnosis, it would be worth getting a private appointment so he can advise on better medication. I appreciate not everyone can afford this.

Thanks everyone for sharing your experience and advice. I will get some compression tights for her as she always complains her legs being weak after 10 minutes of standing up. After the CBT at least now she will try to go out for a short walk.

@SwordBilledHummingbird I will look into slow sodium. She takes an electrolyte daily already.

Recently she was offered a small pt job unfortunately she s too anxious about all the standing up and walking around the job involved so she just turned it down at the last minute. I did offer to her that I could stay in the car park for as long as necessary while she s at work but still she was too worried. I was so hoping that she could use this little job to build up her strength mentally and physically!☹️

Hi, I am a bit older than your daughter (26) but have had POTS symptoms for years and was finally diagnosed in 2023. I can sympathise with her not wanting to work in a job where she is standing for prolonged periods, as well as the fear of fainting. I developed agoraphobia for a while when my symptoms were at their worst because I was terrified of passing out in public. I also had to stop working and studying for a while because I wasn't well enough - slowly going back to normality now.

It's good that she is getting counselling to help manage the anxiety. Small steps of exposure (such as the walks) are helpful as well. I think addressing the fear of fainting is really important - if she did faint in a public place, she would be okay, there would be first aiders around etc. who would help.

What medication is she on? I was initially put on propranolol which made me feel even woozier. Midodrine and ivabradine have helped me regain some energy and stopped the dizzy feeling.

Light exercise (I have a walking pad) has helped with symptom control, as has keeping the same sleep schedule and taking meds at the same time every morning.

Wish her all the best - it is tough and it can be isolating.

@anonymous98 she was on proranolol for over a year until 2 months ago they changed to something else (I don’t know what) that has made her feel more stable. We go out to walk everyday and try increase a few minutes per walk every now and then.

For lots of helpful info about POTS etc, as well as helpful support, see:

- Arrythmia Alliance network webpage. heartrhythmalliance.org/stars/uk/conditions/postural-tachycardia-syndrome-pots