Doctor wasn’t much help tbh, compression socks, lots of salt and try to sit down before you fall down, were basically all the advice I got. The nhs is a bit shit tho.
I’ve been to two of the best hospitals in the world (not on purpose, just coincidentally and they wanted to check it out in their specialty clinics) and went through some unpleasant testing (one is called a thermoregulation sweat test that they cover you in color changing sand), and that’s the exact same thing I have to do.
I take 4 salt pills, drink 3 liters of water, Gatorade or Pedialyte and a beta blocker. I do cardio. The one thing I am starting to get better at now is lower body strength - my legs are pretty dinky and along with increased blood volume, bigger leg muscles can help ease the symptoms.
The beta blocker thing I got unlucky with though, there’s a few of them that are better for pots but I can’t metabolize them (or maybe I rapidly metabolize them so they don’t work at all, I cant remember).
What was the sweat test like? Did they just end up being like, “Yep, you’re all hot and sweaty now. Looks like you weren’t lying about that.” and that was it?
My heat regulation is completely borked and I pour with sweat if I am moving around for long enough to warm up, it’s awful. I’m on 5 to 10 litres of water a day, depending on if I’m able to get up and do stuff that day or not, I think I’d die of dehydration if I was only on 3.
Guessing all the electrolytes you’re taking help with retaining the water though? I should look into that, there’s only so much salty popcorn I can eat.
The sweat test was awful. You basically wear your underwear, lie down in what amounts to a glass oven, then they spread sand all over your and you sit still for an hour and bake. Then they take a picture at the end.
And purple means sweat, yellow means no sweat. It shows what sweat glands activated by the autonomic nervous system. Then you have to shower it off and it takes forever.
They were very professional about it though, it was a nurse, a doc, and technician. I guess they were doing multiple tests at the same time, but I never saw other people doing it. Which was a relief I didn’t really want to see other purple people
Ugh, I would have been a miserable puddle of sensory overload. Kinda glad the nhs doesn’t have the budget for that kind of thing now.
As far as I know I’m the only one without high blood pressure in my family too, it’s weird how stress can break us so differently despite the shared genes.
I was in a miserable puddle of sensory overload. 15 years after the test I started learning that yeah I’m probably ASD, and there’s a strange correlation with ASD and POTS. Neuron magic.
It does help me keep volume, definitely. I found ones called “vitassium”. They have 500mg of sodium, 100mg of potassium per pill. That seems to work ok with 3L, so it should help reduce your intake.
It’s kind of weird to think about though. All my life I had to listen to my family having too high blood pressure so I got used to not eating salt.
Aye, spot on on all counts, it’s dysautonomia.
Doctor wasn’t much help tbh, compression socks, lots of salt and try to sit down before you fall down, were basically all the advice I got. The nhs is a bit shit tho.
Well, bro, I got some bad news on that front.
I’ve been to two of the best hospitals in the world (not on purpose, just coincidentally and they wanted to check it out in their specialty clinics) and went through some unpleasant testing (one is called a thermoregulation sweat test that they cover you in color changing sand), and that’s the exact same thing I have to do.
I take 4 salt pills, drink 3 liters of water, Gatorade or Pedialyte and a beta blocker. I do cardio. The one thing I am starting to get better at now is lower body strength - my legs are pretty dinky and along with increased blood volume, bigger leg muscles can help ease the symptoms.
The beta blocker thing I got unlucky with though, there’s a few of them that are better for pots but I can’t metabolize them (or maybe I rapidly metabolize them so they don’t work at all, I cant remember).
What was the sweat test like? Did they just end up being like, “Yep, you’re all hot and sweaty now. Looks like you weren’t lying about that.” and that was it?
My heat regulation is completely borked and I pour with sweat if I am moving around for long enough to warm up, it’s awful. I’m on 5 to 10 litres of water a day, depending on if I’m able to get up and do stuff that day or not, I think I’d die of dehydration if I was only on 3.
Guessing all the electrolytes you’re taking help with retaining the water though? I should look into that, there’s only so much salty popcorn I can eat.
The sweat test was awful. You basically wear your underwear, lie down in what amounts to a glass oven, then they spread sand all over your and you sit still for an hour and bake. Then they take a picture at the end.
And purple means sweat, yellow means no sweat. It shows what sweat glands activated by the autonomic nervous system. Then you have to shower it off and it takes forever.
They were very professional about it though, it was a nurse, a doc, and technician. I guess they were doing multiple tests at the same time, but I never saw other people doing it. Which was a relief I didn’t really want to see other purple people
Ugh, I would have been a miserable puddle of sensory overload. Kinda glad the nhs doesn’t have the budget for that kind of thing now.
As far as I know I’m the only one without high blood pressure in my family too, it’s weird how stress can break us so differently despite the shared genes.
Thank you for the Vitassium link!
I was in a miserable puddle of sensory overload. 15 years after the test I started learning that yeah I’m probably ASD, and there’s a strange correlation with ASD and POTS. Neuron magic.
And no problem with that yeah.
It does help me keep volume, definitely. I found ones called “vitassium”. They have 500mg of sodium, 100mg of potassium per pill. That seems to work ok with 3L, so it should help reduce your intake.
It’s kind of weird to think about though. All my life I had to listen to my family having too high blood pressure so I got used to not eating salt.
Well that backfired.