Anyone else have PoTS?

[DemonEyes]

I was wondering if anyone else with fibromyalgia has PoTS (Postural tachycardia syndrome)

A loud noise made me jump up. For a minute I was fine, then suddenly started to feel dizzy, a really weird feeling in my chest kind (of like when you have the flu, that chesty feeling). Then I started to get lightheaded and got pins and needlesin my hands and felt like I couldn't catch my breath. It made me really scared and I just want to know if anyone else gets this, and if they do if there's anything that helps.

thanks 💙

[happytulip]

POTs UK has a brilliant website. It has loads of helpful ideas and ways to change your lifestyle to help.

High fluid intake, preferably cold from the fridge as it stimulates the vagul nerve.

Don't overheat

High salt diet (but check with Dr first)

Grade 2 compression stockings

And most importantly, excersise that improves your calf muscle pump action. Walking is great as it strengthens bones too. Swimming is highly recommended as well. Have a peak at the website and see what you think.

I and many family members have POTs.

It can be well managed with meds and lifestyle changes, or just lifestyle changes on its own.

Good luck. It can be frightening and unpleasant, but it can be managed.

I avoid caffeine and alcohol.

[Elizahl]

I don't have advice but been told I might have this to and waiting on further tests to ensure its not something else but they are almost certain jt is this. I am just sharing so you know you are not alone and hopefully we will learn of something I've been up half the night as I couldn't breathe properly its terrible.

[happytulip in reply to Elizahl]

If you can't breathe properly with POTs it will likely be down to palpitations that you don't realise are happening or your Autonomic Nervous System (ANS) is having a party that you haven't invited it to making over breathe.

That is all in my experience and that's IF you have POTs. What has worked for me in the past has been putting a maliable icepack on my neck. It is placed over the jugular/carotid artery area. There are receptors in your anatomy in that area that can calm the ANS and help to bring your breathing back under control. That is IF it is POTs. It has worked for me in the past although it's bloomin cold!!

I am also able to take an extra beta-blocker if I need to but I have a confirmed diagnosis of POTs.

I find my POTs symptoms worsen with changing levels of estrogen. Aren't hormones marvelous, groan!

I hope you manage to get to the bottom of what's happening. I presume that you will be having a tilt test as that is the Gold Standard for a POTs diagnosis?

[Elizahl in reply to happytulip]

Honestly I don't know all I've recieved is a heart monitor appointment. They told me ring if I had issues I did and they told me go to gp. Gp sent me to a&e they did xray ecg and bloods all clear so sent me home with nebuliser but it didn't help. Went to gp again she gave me steroids and an inhaler to try and is getting onto respiratory team in hospital to see can they speed up seeing me and doing some more tests. In the meantime I'm stuck in no man's land scared and untreated and no idea how I am going to manage school runs starting back Thursday. They said it could by pots or myocarditos and won't know until I have tests.