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Something’s not right

I think I may have POTS…

I think I may have POTS…

Hey forum fam,

A few months ago I noticed my hands were patchy red and tingly. I did some further research into this and found out it was blood pooling in my hands.

Both my BP & HR have always run high, even when I’m doing absolutely nothing. Most recent BP measurement was 133/74 (at 4pm today).

I’ve also noted I get pins and needles in my legs when I’m sitting in a chair with my legs hanging down/feet touching the floor.

I’ve never fainted however I have felt very dizzy and needed to sit down and catch my breath. I’m tired a lot of the time and needed a lottt of sleep to not feel tired.

Hoping to get some advice on what to do next (I know I have to tell my doctor about this but I’m not entirely sure how to bring it up)

Sorry if none of this makes sense, my brain is totally fried atm. 😂

2 replies

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In response to: I think I may have POTS…

Re: I think I may have POTS…

Hi @starsmile

While I don't have POTS, I do have postural hypotension which i'm told is very similar. MY BP is normal when i'm sitting, but the instant i stand it drops significantly. So i've never fainted either... i've felt close at times, but it really limits what I can do while standing as I need to regularly sit down as i will start to feel dizzy/lightheaded.

It's become easier over time as I know now not to push myself when I feel those early warnings as I used to just try to push through them, but it only made things worse. It's still very frustrating though and very limiting physically.

I've seen a hypertension specialist about it and although they say there's not much they can do to get rid of it, it's more about managing the symptoms. Mine wasn't discovered until my GP decided to measure my BP while standing as well as while i was sitting. Only then was the rapid change detected.

A far as dealing with my symptoms, getting up slowly, drinking plenty of water, extra salt, I was put on fludrocortisone tablets to help the body retain fluid and salts, small more frequent meals to help with sudden BP drops, compression socks throughout the day - especially when standing/walking, and being very careful when exercising.

It was really confusing when I didn't know what was happening. It took a few years before my GP figured it out. I was just feeling fatigued and lightheaded all the time, and the simplest physical activities just seemed to drain me so quickly. Once I found out and could start to manage it, it became easier but as I said before, it's still very limiting... but other health conditions may not be helping there.

In response to: Re: I think I may have POTS…

Re: I think I may have POTS…

@starsmile hey.

I have pots. It is usually OK, I didn't realise I had it had for a long time. It's one of things that needs to get medically checked out and investigated especially to see if it is caused by underlying health issues. Pots can have many different signs, and Dr Google isn't an accurate assessor of symptoms or disorders. If the symptoms are worrying you it's a good idea to being it up with your gp.

Pots can usually be managed with lifestyle changes or medications. It's not a life sentence either.

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