Postural Tachycardia syndrome POTS- advice from any sufferers please

[Petalsoflove]

I have decided to pay to see a private cardiologist given I've been waiting months for GP to refer me properly and now I find out they only giving me a phonecall appointment in march, rediculous.

My symptoms are feeling fuzzy if I get up fast, feel really bad if I bend down and stand up like head rush and I've noticed my HR increasing significantly. Also my toes have decided to take on a purple ish colour and almost looks like chillblanes. Don't know if related.

I've been told that it's unlikely I can have a tilt table test as they don't do them and it's an "old" test. But I don't want to go miles away from home as more stress.

I just wanted to hear from anyone who has it and how was it diagnosed, what was your HR?

I also have hashimotos thyroiditis but this is supposably treated now.

I feel worse in the mornings. I know it also sounds a bit like postural hypotension, but I've tested my BP and there is no drop on standing it just goes up.

I'm feeling fed up and depressed with not feeling good and not having any explanation. This all started since me having baby last Feb by the way.

Thanks again

[Lisell]

I haven't been diagnosed with PoTs but I have had a tilt table test last year(have a racing heart with the slightest of exertion) so not sure why they are saying it is an old test because it is one of the tools they use to diagnose PoTs. You certainly sound like you have many of the symptoms of PoTs. I totally understand your frustration with the NHS, I am there also, thinking about my next move. Going private is a good move you will certainly get seen sooner, good luck.

[Petalsoflove in reply to Lisell]

It's hard work to get anywhere and impossible with current situation.Thanks for reply, I hope you are coping ok with your fast HR and get answers.

[jeanjeannie50]

The best advice usually comes from this cardiologist:

youtube.com/watch?v=d7mY4hM...(Not working as expected?)

[Petalsoflove in reply to jeanjeannie50]

Thankyou I'll have a watch

[Hidden in reply to Petalsoflove]

Hi did you get sorted? I have similar symptoms but my blood pressure drops by over 20 and heart rate goes up by up to 60bpm on standing. I’m dreading this summer as I was nearly blacking out all the time when it was hot all last year. I’m in Birmingham but have been referred to a London hospital for testing and I called them myself and they accepted me and then I had my doctor do a referral.

I’m still waiting as the autonomic unit was closed because of Covid but I know my appt will be between now and July as I have an appt to discuss the findings in July. Add way to do things but...

I had an hour on the phone with a consultant as he thinks I may have pre syncope/elders danlos and or POTS.

They have told me I will have the tilt test so your doctor needs a telling off. This is very much still a very relevant test.

Let me know if you get this as I can give you the departments number and you could call to see if they will see you.

The mornings are the worst, I feel sick to the stomach for the first hour of every day!

[Petalsoflove in reply to Hidden]

Hi,Sorry late response I wanted to reply given your answer. I saw a cardiologist and had a 24hour ecg, it was normal although given my symptoms and I did have a fast hr when I was in there- he actually said I had possible inappropriate sinus tachycardia. He did a very rushed lying standing test, so I didn't get the assessment I wanted but there we go.

He did say he didn't think it was pots as hr usually goes up way higher and BP drops/ but I know this isn't always the case.

I took beta blockers for a while which lessened my anxiety somewhat but I was still feeling woozy so I have stopped them.

I'm actually feeling ok now, I have times when I'm a bit woozy but overall I feel a lot better than I did.

I've stopped worrying and thinking about my HR all the time which was a major factor for me. As anxiety creates the same symptoms.

I think my BP can be on lower side too which could cause the symptoms but the who knows.

Good luck with your investigations, if your feeling like blacking out and your BP dropping it certainly looks more like pots but potentially postural hypotension too as I think your HR can increase in response to the drop in BP.

Hope you get answers.