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Does anyone here have POTS or know anyone with it?

 
Anonymous Coward
User ID: 80220497
05/02/2021 08:13 PM
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Re: Does anyone here have POTS or know anyone with it?
I would join a FB group - as much as I hate the Zuck, those boards are very good learning from others, not the "experts". My daughter-in-law has MALS, SMA and Nutcracker. Invaluable info from people on those boards.
 Quoting: Anonymous Coward 80265248


yeah, thanks, just not into facebook.
 Quoting: Rasen1


Tons of folks discuss their experiences on it via YT


 Quoting: CleverCreator


Hi CC are you well?
hf
 Quoting: Anonymous Coward 80306160


hugs

Muddling along.

Hope all is decent in your world too.
Trained NoticerModerator
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User ID: 76014573
United States
05/02/2021 08:20 PM

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Re: Does anyone here have POTS or know anyone with it?
Such an easy target,

but,

It is a real thing.

Best wishes, OP.

fl4
For those who believe, no proof is necessary. For those who don't believe, no proof is possible. (Stuart Chase)

It's easier to fool people than to convince them that they have been fooled. (Mark Twain)
peterpeccary

User ID: 79044425
United States
05/02/2021 08:21 PM
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Re: Does anyone here have POTS or know anyone with it?
I have lots of pots in my electronic bin....
Anonymous Coward
User ID: 70989098
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05/02/2021 09:06 PM
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Re: Does anyone here have POTS or know anyone with it?
I’ve got pots

Which is just a general name for a group of like symptoms.

So mine started when I was 30 and I’m a dude which happens less to men than women. I’ve passed out the first time I thought I was just dehydrated, then it kept happening. Went to doctors a nurse practitioner said “sounds like pots”. Which is generic name for the symptoms not what’s actually wrong with you. So after another dozen trips to doctors for various tests to rule out other illnesses finally a tilt aka table test. I passed out and diagnosed with pots. And all they could do was give me recommendations on how to deal with it. You can go through hundred more tests to figure out the root cause but it’ll be hundreds of doctor visits.

Mine isn’t so severe I just have learned to deal with it the last 10yrs.
For me dehydration is biggest trigger, getting up too fast or walking outside into a hot summer day can trigger it. And if I’ve smoked weed it’s much easier to trigger while I’m stoned. I’ve also learned when I start feeling dizzy to get flat on the floor.... because falling hurts lol. And it helps the episode to pass just be carefully getting back up sometimes it’ll feel like your ok until you try to stand again.

Staying hydrated and salt intake is the most important factors for me.
BertTabernacle

User ID: 80437594
United Kingdom
06/09/2021 05:23 AM
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Re: Does anyone here have POTS or know anyone with it?
My daughter has this. We eventually homeschooled her. The sitting to standing to get up from one class to another made her so dizzy.

She still has moments of dizzyness...but she has learned how to get up slower, which helps with it. We also have to have her get regular blood work, anything that might affect her heart needs to be caught right away.

Her quality of life got better after we took her out of school and she learned how to get up slower. It can still be an issue for her at certain times...it stinks and I am sorry to hear you have this.

Good luck
 Quoting: veemee


Thats good to hear.

I asked because Im hearing that more and more people are having symptoms of this, or maybe they're getting better at diagnosisng it, im expecting a diagnosis soon, just having tests for it.
 Quoting: Rasen1


Hey Rasen, hope you're well, not seen you around for ages! You had your test results back yet?





GLP