Could this be POTS?

[Orangeblueberry]

I’ve been suffering increasingly with terrible fatigue. I was told many years ago it’s probably M.E and to pace but it’s just getting worse. I have headaches and a pounding heart when I stand up. My pulse goes from 70 when sitting to 127beats 2,5 and after 10 mins is till 123. I feel I can’t get my eyes to focus on things when I’m standing. I’m always freezing, especially in my hand and feet. Also have brain fog and so forgetful. All of this increases 10 fold when I’m on my period. I’m 40. My fatigue is killing me and I can’t really work anymore.

Sorry to hear you're feeling so poorly 😞 I started to suffer from POTS post COVID at the end of 2020(I still have it now but to a far lesser extent) and your symptoms sound identical to mine, particularly it being worse when on your period. I had horrendous headaches with it to begin with. I found Ivabradine helpful for taking the edge off it all and helping me get back on my feet (I started with Bisoprolol from the GP which was less helpful, but was switched to Ivabradine by cardiology which was much better.)

You need a 24 hour heart monitor ideally and a heart scan to check there's nothing else going on, then medication and support if your heart is ok to start to get things under control.

You have my total sympathy - it's awful 😞

I’ve been suffering for about 4 or 5 years now and keep getting fobbed off. They have said it’s M.E but I have always been unsure. It’s getting worse and worse and I’m hardly able to function now which is hard with a 7 and 1 year old. No tablet takes the edge off the headaches and they make me feel sick for weeks at a time. I’ve had a few ecgs because of setting off monitors after both c-sections, they always come back with a slight abnormality but no further action ever taken.

Definitely push - I'm pretty sure that POTS is common with ME patients too, so it wouldn't be a surprise. My headaches only improved once my heart rate was more under control (it still rose on standing, but my resting heart rate was lower and it didn't reach the heights it was reaching previously when walking etc so made me feel less awful I think.)

Does sound like POTS but those symptoms can also be a sign of other things. Id recommend go to your GP, you need a referral to cardiology who will ideally give you a 24h ECG monitor or perhaps a tilt table test although those are tricky to get unless they have ruled out every other option first.

In the meantime, try increasing salt in your diet, drink liquids with electrolytes in (Gatorade or Lucozade are good) and if you feel yourself going lightheaded or your vision going when you stand up, clench your bum cheeks together, I know it sounds odd but it was a tip given to me by my cardiologist and it honestly works

Compression socks also help. You can get ones that look normal and not like you're a hospital inpatient.

I have diagnosed "sinus tacchycardia and orthostatic intolerance" which I'm convinced is POTS but my cardiologist seems adamant it isn't despite me having all the symptoms. My heart goes from 60 sitting down to 120/130 standing up. But not all the time, some days it's not so bad.

I take bisoprolol and feel much better on it. I also have low blood pressure so add salt to food. I need to be better at drinking water as that helps too. I also got mine after having (suspected) covid in March 2020 so has been 4 years now.

I’m just unsure whether pots causes the m.e or the other way around. I’ve read that pots is something about having the automatic body functions running to fast and making you tired. I’m just fed up of the fatigue so trying to look into it. It’s worth trying as doing nothing is just getting me down.