PoTs in this heatwave

[KittyLouise199]

I have an (almost confirmed) diagnosis of PoTs, just waiting on a couple more results.

What I've noticed that I haven't noticed before is the impact that this heatwave (I'm in London) is having on me and I was wondering what other people's experiences were.

Other than feeling washed out and lethargic, I've noticed my bp is even lower ( 99/65) and when I get very hot (for example just after dropping kids at school in the heat), I can't seem to catch a satisfying full breath. This eventually resolves after a while, but I definitely feel it. I took my O2 sats when this was happening and it was 98/99% so I'm not sure what's going on.

I'm 42 female.

Thanks

I don’t know the medical side but SAME!

@AmITotallyBonkers thanks for replying. Do you also have PoTs? And when you say same, do you mean you also struggle with the air hunger?

Bump anyone?

My DD has PoTS. She told me today that it is taking her a long time just to be able to stand up without fainting.... She seems to be spending most of her time lying on the wood floor!

She already drinks 3.5-4 litres a day so drinking more is difficult.

The needing to take a breath is air hunger - DD is under respiratory physio as part of her PoTS treatment. Shallow breathing causes issues and they are teaching her to breathe properly 🙂 which in her case means taking deeper breaths!

Yes, like I can’t quite catch my breath

@AmITotallyBonkers do you know why you get this? Have you had any diagnosis?

I don’t know why, I have Hypertrophic Cardiomyopathy. I’ve mentioned it a few times, the answer is always stay hydrated 🫣

@AmITotallyBonkers I have terrible HA and now I'm worried I might have this...

I have POTS and feel like I am struggling to breathe. I have been fainting more often and I really cannot do much at all.
Hydrate as much as possible and I'm taking absolutely ages about just getting up from sitting.
I used to be just getting out of bed and I'd keel over in hallway or bathroom, but now it's just getting off the sofa.

I'm exhausted too. I expect most people are but... Pfft yes.

You have my sympathy, honestly drink as much water as you can and just take it slowly.

Re-order that to make some sense of it!

I meant to add that I have a handheld usb charge fan and if I hold it constantly on my face I do feel I can breathe a bit easier.
I'd never heard the term air hunger but that makes absolute sense thank you.

Why can't we just have a happy medium? It seems to be heatwave or rain!

I was diagnosed with POTS last year and can’t cope with hot weather (over 25) at all anymore. I start fainting if I’m out in it. The struggle for breath is horrible, it’s feels like someone is sitting on my chest. My BP struggles to get over 90/60 even on normal days. I generally feel awful for the first hour after getting up. After lying down all night I need 2 cups of strong coffee and an hour to feel semi-normal. When I get out of bed in the morning my Fitbit always congratulates me as it thinks I’m exercising. My HR easily spikes from low 60s to over 125 simply for getting out of bed.

Sadly hot weather increases POTS symptoms & lowers BP even further due to blood vessels expanding I think. In my case my POTS is almost definitely related to hEDS which I have also been diagnosed with. I’m lucky though and found being more active/fitter, losing weight, staying hydrated & eating salty food really helps in keeping it manageable. Probably because hEDS is a connective tissue disorder. I also use Liquid IV electrolyte sachets daily. However this hot weather aggravates my POTS/hEDS even further by preventing me from keeping active (daily walks). I think I need to move somewhere colder!

Definitely worse in hot weather. My DD has a confirmed diagnosis of POTS (and hEDS) and my GP suspects I may have it. I have low BP anyway. Keep hydrated. Same as @Tortoiseoncaffeine says, caffeine, electrolytes and salt and I can just about keep going.

@BestIsWestyou probably do have it, hEDS is very hereditary. My sister has it too (and the POTS), and my 87 year old dad can still touch his toes with his hands flat on the floor! But it was called double jointed in his day.

@Tortoiseoncaffeine I can do all the bendy finger stuff etc and I fit all the criteria for hEDS, as did my Dad too. It’s probably to blame for much of the arthritis I have now. I should push for a diagnosis really.

I have pots up your salt, drink lots of water like 3 or 4 litres don't go outside if you can help it. Its completely normal for it to get significantly worse in the heat.

Yes I have a lot of Hypermobile related osteoarthritis now (aged 55). Also explains so much of my previous medical history over the years. It’s useful to have diagnoses even though there’s no real treatment as such. I had major neck surgery a couple of years before diagnosis, and permanent nerve damage occurred, probably because people with hEDS can damage more easily & it takes longer to heal. If I had known I had hEDS beforehand, surgery may have been approached differently and avoided that. So it is helpful to know.

I have this and my understanding of the feeling like lack of breath is that can often have low blood volume or poor circulation so even though your blood is sufficiently oxygenated, not enough blood is getting to your brain so your brain is sending out signals to your body that oxygen is low which makes you try to compensate by breathing harder or more rapidly.

Thanks @Tortoiseoncaffeine , that’s helpful to know. I know what you mean about it explaining lots of things; when DD was going through her diagnosis I kept ticking off lots of things. Next time I go to the GP I’ll mention it.

Good luck! Sounds like your GP is on board to help.

POTS sufferer here too. It's shite at normal temperatures but this is ridiculous. My baseline is taking in 3 litres of water/electrolytes on a normal day. Reckon it's been more like 5 over the last few days. I have to wear waist high compression if I'm going out and about. I can struggle to get it on at the best of times but pulling compression tights on when even your shins are sweating is frankly ludicrous 🥵

I walked back into the office this afternoon and apparently must have looked ropey as one colleague brought a fan over and another some water!

We're going through the process of trying to get a diagnosis for DD at the moment and she's really struggling in this weather. Her heart rate today was around 130-140 most of the time going up to 200 if she had to go up stairs. She was sent home from school once they checked her pulse! she's got an ECG next week.

I have these conditions as well and get the catching-breath thing. I also feel very detached from reality, like I am in a dream. Coffee first thing and the ofc bit of salt help with my bp but otherwise I just can’t do much & have to lie down a lot. The one thing I’ve discovered helpful is crunching or sucking on ice cubes and ice lollies. I also think it’s linked to my migraines but not sure.

Another POTS sufferer here, diagnosed by my Cardiologist - Dr Gupta.

Looking back I had probably suffered since my teens, and just grown used to being constantly dismissed. I have certainly always loathed hot weather.

This article is worth reading

drsanjayguptacardiologist.com/how-to-manage-pots/

I have respiratory disease, not POTs but I often find it more comfortable lying down, BP was always low normal. Agree about salt. Also I read a book called Breathing Pattern Disorders. Best exercise, saying this as someone with respiratory disease so I constantly overuse my neck muscles to breathe, was lying down with a 500g bag of rice just below your belly button. Breathe up and down so you can see the rice moving. Repeat 5 mins 2 - 3 times a day. Helps strengthen those muscles.

Also doing planks to strength the core.