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Original poster

Please anyone with pots??

33 replies

Anonymousxo · 02/12/2021 13:24

I went to a&e yesterday and I constantly feel faint and dizzy more so when I'm walking and standing still but it also happens occasionally when I'm sat up, doctors speculate pots as when I stand my heart rate shoots up to 130/140 but when I'm sat it goes back under 100 - however what worries me is that I'm symptomatic all the time!!! It doesn't matter if my heart rate is low or high I'm always symptomatic except when lying down :/ this is making me think what if it isn't pots and it's something else....can anyone please tell me if you can be symptomatic with a normal heart rate with pots? :( also I suffer everyday, there's not a day that has gone by since august where I haven't been faint, I had a holter monitor which also showed these abnormal spikes.

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Original poster
Anonymousxo · 02/12/2021 13:38

Anyone?

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Original poster
Anonymousxo · 02/12/2021 14:20

.

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KitKat0909 · 02/12/2021 18:26

Hello. I have POTs. Sometimes I feel really unwell with it. I have stomach problems too that may or may not be related. I hate the horrible feeling when standing up, it's like my heart is going to explode out of my chest.

Have you seen a specialist?

Original poster
Anonymousxo · 02/12/2021 19:16

@KitKat0909

Hello. I have POTs. Sometimes I feel really unwell with it. I have stomach problems too that may or may not be related. I hate the horrible feeling when standing up, it's like my heart is going to explode out of my chest.

Have you seen a specialist?

I get that feeling aswell, when I stand I feel my heart beating faster and faster ... I haven't yet, I went a&e yesterday because I had a complicated faint which was scary but when I went hospital I did the stand test and it went up really high on standing, problem is when I have a normal heart rate I feel dizzy aswell so I just I don't know :( they told me it basically is pots but I haven't been seen by a specialist yet I'm on a waiting list
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GeorgieMM · 02/12/2021 21:11

Yes I have POTS and for the few first few months after symptoms started it didn't matter what position I was in, just felt dreadful constantly and couldn't function. POTS has so many symptoms that aren't related to position. Ideally you need a Tilt table test to diagnose. Have you been given advice about increasing salt, fluids etc? POTS uk are a good website

Original poster
Anonymousxo · 02/12/2021 21:14

@GeorgieMM

Yes I have POTS and for the few first few months after symptoms started it didn't matter what position I was in, just felt dreadful constantly and couldn't function. POTS has so many symptoms that aren't related to position. Ideally you need a Tilt table test to diagnose. Have you been given advice about increasing salt, fluids etc? POTS uk are a good website
Really?! So you don't necessarily need a high heart rate for symptoms? I haven't had a tilt table just active stand tests atm...yeah I have been told about compression socks and things, was going to buy SIS tablets apparantly they're good
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rjacksmiss · 02/12/2021 21:19

Drink loads of fluids, lucozade sport is good for me when I get bad. Mine settled down on its own. I got quite into fitness and it helped a lot! Always flares up around my period!

rjacksmiss · 02/12/2021 21:20

Get the leg muscles strengthened up!

GeorgieMM · 02/12/2021 21:23

The diagnostic criteria is obviously the High heart rate but no plenty of symptoms when I'm not upright- to name a few nausea, palpitations/ectopics, diarrhoea, no temperature control, fatigue, insomnia. Basically anything that your nervous system controls can go wrong!

GeorgieMM · 02/12/2021 21:25

And as a pp poster said exercise is really good to help you improve, stronger muscles help your body pump blood more effectively

Original poster
Anonymousxo · 02/12/2021 21:43

@rjacksmiss

Drink loads of fluids, lucozade sport is good for me when I get bad. Mine settled down on its own. I got quite into fitness and it helped a lot! Always flares up around my period!
Yep when my period is due is the worst!!!! I believe that's why I got so bad I ended up going a&e yesterday, I had what felt like a seizure but once I got to a&e they sound it sounded more like a complicated faint - came on today and thought wow that explains so much :(
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Original poster
Anonymousxo · 02/12/2021 21:45

@GeorgieMM

The diagnostic criteria is obviously the High heart rate but no plenty of symptoms when I'm not upright- to name a few nausea, palpitations/ectopics, diarrhoea, no temperature control, fatigue, insomnia. Basically anything that your nervous system controls can go wrong!
Yeah so they did say it looks like I have pots they said they didn't want to say for definite but they spoke to cardio and cardio said definitely sounds like pots and said I should go off the fact that my heart rate shoots up when I stand and also that I'm very symptomatic so pretty much pots
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rjacksmiss · 02/12/2021 22:00

"Yep when my period is due is the worst!!!! I believe that's why I got so bad I ended up going a&e yesterday, I had what felt like a seizure but once I got to a&e they sound it sounded more like a complicated faint - came on today and thought wow that explains so much :("

Yeah that's exactly how I am. Almost feels convulsy when I'm going down. It's really horrible! Keep the electrolytes up! Please don't lay down to it. Fight it as much as you can with exercise and keep the legs moving as much as possible. You'll feel better soon. Don't be scared! X

Original poster
Anonymousxo · 02/12/2021 22:04

@rjacksmiss

"Yep when my period is due is the worst!!!! I believe that's why I got so bad I ended up going a&e yesterday, I had what felt like a seizure but once I got to a&e they sound it sounded more like a complicated faint - came on today and thought wow that explains so much :("

Yeah that's exactly how I am. Almost feels convulsy when I'm going down. It's really horrible! Keep the electrolytes up! Please don't lay down to it. Fight it as much as you can with exercise and keep the legs moving as much as possible. You'll feel better soon. Don't be scared! X

So it's definitely possible to get symptoms even when the heart rate isn't high? I never get symptoms laying down it's always if I'm sat upright or standing :( thank you!
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Innocenta · 03/12/2021 07:44

Good news is, POTS is super treatable and not dangerous! There are many safe options to self manage at home which need no direct medical input (compression, increased fluid and electrolytes, POTS-friendly exercise... to name just a few!), but there are also multiple very effective medications. If you want to consider seeing a specialist, I can suggest some good ones. Smile

Original poster
Anonymousxo · 03/12/2021 08:31

@Innocenta

Good news is, POTS is super treatable and not dangerous! There are many safe options to self manage at home which need no direct medical input (compression, increased fluid and electrolytes, POTS-friendly exercise... to name just a few!), but there are also multiple very effective medications. If you want to consider seeing a specialist, I can suggest some good ones. Smile
Yeah I know pots is a fairly benign condition, but it affects me every single day:( even without a high heart rate I'm very symptomatic. I've heard of dr gall...I was thinking about going private but the a&e doctor told me cardio said they will push my referral forward so I should get seen earlier :/ hopefully!
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Innocenta · 03/12/2021 09:11

I have v severe POTS, I know how much it can suck, believe me. But still, far better than having to have surgery!

Honestly, if you can afford it, just see Dr Gall or Dr Lim from Harley St. They're both excellent and it doesn't mean you can't also receive NHS support.

What measures are you taking to manage your symptoms? The first things you will often be advised to do are often lifestyle measures. You don't need to wait to do these!

Stormwhale · 03/12/2021 09:29

I have pots and have found that the symptoms that I get that mimic the pots symptoms when it isn't being caused by my heart rate etc is actually being caused by my vagus nerve. When the vagus nerve is activated it causes you to feel faint, sick, etc. The way I deal with this is to lie down with an ice pack on my chest. It calms it down in 15 minutes. It is caused by stress/anxiety, which is not surprising when you are dealing with chronic health problems.

Stormwhale · 03/12/2021 09:30

www.verywellhealth.com/vasovagal-reflex-1945072

Stormwhale · 03/12/2021 09:32

Dr gall is amazing by the way. His nhs wait time is around a year at present, but he knows pots inside out and really listens. He looks at you as a whole person and took into account all of my health problems rather than just focusing on one thing. Well worth what we paid to see him privately.

Innocenta · 03/12/2021 09:32

@Stormwhale

Dr gall is amazing by the way. His nhs wait time is around a year at present, but he knows pots inside out and really listens. He looks at you as a whole person and took into account all of my health problems rather than just focusing on one thing. Well worth what we paid to see him privately.
Completely agree with you!
Original poster
Anonymousxo · 03/12/2021 11:09

@Innocenta

I have v severe POTS, I know how much it can suck, believe me. But still, far better than having to have surgery!

Honestly, if you can afford it, just see Dr Gall or Dr Lim from Harley St. They're both excellent and it doesn't mean you can't also receive NHS support.

What measures are you taking to manage your symptoms? The first things you will often be advised to do are often lifestyle measures. You don't need to wait to do these!

So you get symptoms even without the high heart rate aswell? So I currently wear compression socks which help slightly but don't get rid of my symptoms completely I also drink electrolyte tablets, still doesn't help much..I'm currently on my period and this is the worst my symptoms have ever been since august, I keep feeling like I'm going to faint I honestly feel awful.
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Original poster
Anonymousxo · 03/12/2021 11:10

@Stormwhale

I have pots and have found that the symptoms that I get that mimic the pots symptoms when it isn't being caused by my heart rate etc is actually being caused by my vagus nerve. When the vagus nerve is activated it causes you to feel faint, sick, etc. The way I deal with this is to lie down with an ice pack on my chest. It calms it down in 15 minutes. It is caused by stress/anxiety, which is not surprising when you are dealing with chronic health problems.
Really? I never thought this could be an option because il just be sat up right working from home and feel like my head is dropping like I'm going to faint, it's awful!
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Innocenta · 03/12/2021 12:23

You poor thing, @Anonymousxo ! Yes, I get symptoms every day, no matter what my heart rate. Mine is, excuse the language, absolutely fucked and ranges from 40 to over 200 (this is on medication) - of course I feel worst at the extremes, but you are not weird or anything in having symptoms even when your rate is lower.

Doctors with serious pota expertise will likely suggest full lower body compression. It's massively annoying and can be hot, but it should help a lot more than socks. Blood can pool not just at the bottom of your legs but also in your abdomen. You can get full compression via the NHS (fitted to you) for free, but will have to wait; meanwhile you can try buying compression leggings meant for exercise as this may help a bit.

Try to maintain control of the temperature in your environment as much as you can - fan and heater available even in summer/winter so you can adjust fast if you start to feel worse. Temperature can be a massive trigger for pots.

Do you eat differently at all when on your period? Food can trigger pots more, though it could also just be your hormones.

Your GP might be willing to give you a low dose of beta blockers to tide you over until you can see a consultant - can't guarantee they will, but worth asking. For me, beta blockers did help compared to having nothing! Then actual pots meds helped way more.

Original poster
Anonymousxo · 03/12/2021 12:28

@Innocenta

You poor thing, *@Anonymousxo* ! Yes, I get symptoms every day, no matter what my heart rate. Mine is, excuse the language, absolutely fucked and ranges from 40 to over 200 (this is on medication) - of course I feel worst at the extremes, but you are not weird or anything in having symptoms even when your rate is lower.

Doctors with serious pota expertise will likely suggest full lower body compression. It's massively annoying and can be hot, but it should help a lot more than socks. Blood can pool not just at the bottom of your legs but also in your abdomen. You can get full compression via the NHS (fitted to you) for free, but will have to wait; meanwhile you can try buying compression leggings meant for exercise as this may help a bit.

Try to maintain control of the temperature in your environment as much as you can - fan and heater available even in summer/winter so you can adjust fast if you start to feel worse. Temperature can be a massive trigger for pots.

Do you eat differently at all when on your period? Food can trigger pots more, though it could also just be your hormones.

Your GP might be willing to give you a low dose of beta blockers to tide you over until you can see a consultant - can't guarantee they will, but worth asking. For me, beta blockers did help compared to having nothing! Then actual pots meds helped way more.

Thank you for responding, so yeah mine doesn't get as high as yours, highest mine has ever gone is 150 and usually goes up to 130/140 on standing on daily basis however not every single time I stand either, sometimes it will just go to 110, it differs everyday which I assume is also a normal thing with pots?
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