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Does anyone here have POTS or know anyone with it?

 
Rasen1
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05/02/2021 06:36 AM
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Does anyone here have POTS or know anyone with it?
If, so, what's your experience?
Brit Perspective

User ID: 79371141
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05/02/2021 06:38 AM
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Re: Does anyone here have POTS or know anyone with it?
I have some pots

They used to have flowers in but don't anymore
The chariots of God are tens of thousands, and thousands of thousands.
Nexus-9

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05/02/2021 06:39 AM
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Re: Does anyone here have POTS or know anyone with it?
You can still get a wire tap on POTS.
"Fiery the Angels rose, & as they rose deep thunder roll'd
Around their shores: indignant burning with the fires of Orc" - William Blake, America a Prophecy
(...also misquoted in Blade Runner by Roy Batty)

"Tempus est optimus iudex" - "Time is the best judge"

"The very word "'secrecy'" is repugnant in a free and open society; and we are as a people inherently and historically opposed to secret societies, to secret oaths and to secret proceedings." - John F. Kennedy, New York City, April 27, 1961
Anonymous Coward
User ID: 78996107
Italy
05/02/2021 06:42 AM
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Re: Does anyone here have POTS or know anyone with it?
Penis Overgrowth Testosterone Syndrome?

Yeah, it suck sometimes buying pants, but I've always had girlfriends(s) so it balances out in the end.
Anonymous Coward
User ID: 42990828
United Kingdom
05/02/2021 06:44 AM
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Re: Does anyone here have POTS or know anyone with it?
I have some of the symptoms of POTS (Postural Tachycardia Syndrome)

Can not get it diagnosed because only happens on some days so makes me look like I'm lying or exaggerating to the docs
Anonymous Coward
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05/02/2021 06:52 AM
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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.
Rasen1  (OP)

User ID: 79388617
United Kingdom
05/02/2021 07:03 AM
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Re: Does anyone here have POTS or know anyone with it?
I have some of the symptoms of POTS (Postural Tachycardia Syndrome)

Can not get it diagnosed because only happens on some days so makes me look like I'm lying or exaggerating to the docs
 Quoting: Anonymous Coward 42990828


have you asked for a 7 day heart tracer?
Rasen1  (OP)

User ID: 79388617
United Kingdom
05/02/2021 07:03 AM
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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.
Rasen1  (OP)

User ID: 79388617
United Kingdom
05/02/2021 07:04 AM
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Re: Does anyone here have POTS or know anyone with it?
I have some pots

They used to have flowers in but don't anymore
 Quoting: Brit Perspective


sorry, but thats so severe, nbobody can help you.
veemee

User ID: 15254534
United States
05/02/2021 07:08 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
veemee
Anonymous Coward
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05/02/2021 07:16 AM
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Re: Does anyone here have POTS or know anyone with it?
POTS - sounds like a disease that cannabis kills might get.

lmao

Please consider this a bump and not an intrusion into your post.
Rasen1  (OP)

User ID: 79388617
United Kingdom
05/02/2021 07:17 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.
Rasen1  (OP)

User ID: 79388617
United Kingdom
05/02/2021 07:22 AM
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Re: Does anyone here have POTS or know anyone with it?
POTS - sounds like a disease that cannabis kills might get.

lmao

Please consider this a bump and not an intrusion into your post.
 Quoting: FishingWithFredo


yeah its sure a silly sounding name for something that causes a lot of distressing symptms.
Zerina0308

User ID: 79449957
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05/02/2021 07:32 AM
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Re: Does anyone here have POTS or know anyone with it?
If, so, what's your experience?
 Quoting: Rasen1


Yes. It sucks. Make sure to stay hydrated and be mindful of getting up. When hydrating though, be careful not to wash out your electrolytes. My kid is ordered to salt load from his physician due to low blood pressure. Also, fludrocortizone helps to keep the b/P up.

Dysautonomia International (I think - foggy brain lol) has good information. Typically with POTS there can be more than one dysautonomia going on.

If your fingers bend more than others or have been called double jointed you should look in to Ehlers-Danlos syndrome. Even though it is a genetic disorder, I did not get diagnosed until in my 40's.

Must are misdiagnosed with mixed or undererentiated connective tissue disorder and fibromyalgia.

Pretty much you know you have it if a doctor says something like "Wow, you have great range of motion, I have no idea why you are hurting, your x-rays look fine."
Anonymous Coward
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05/02/2021 07:33 AM
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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


I need to to know, what is nutcracker?
Anonymous Coward
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United States
05/02/2021 07:38 AM
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Re: Does anyone here have POTS or know anyone with it?
POTS is the most common side effect of the HPV vaccines. Just do a quick google search.
Pres. Elect Festus Hoggbottom

User ID: 78382070
United States
05/02/2021 07:43 AM

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Re: Does anyone here have POTS or know anyone with it?
I smoked all of my pots. I'm on the lookout for another batch. You know somebody?
I did it. I did it on purpose. And I'll do it again.
InfiniTea

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Romania
05/02/2021 07:47 AM
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Re: Does anyone here have POTS or know anyone with it?
I have it, but because I didn’t experience it during the tilt test, they don’t say I have it.

My experience? In the military, I had really really bad issues where my blood pressure would drop, and I would be lightheaded. I went to the doctor so many times, and the people there would check my blood pressure. So the one time they gave me saline and my BP dropped even more (he measured me at about 70/30 and thought the machine was wrong and upon recheck it was 50/25, and they sent me home with SIQ and to tell my division I wouldn’t be able to bring the SIQ until the next day. Told me to drink Gatorade. It made me puke.)...

I struggled in the mornings, get up, go to shower...I couldn’t keep the water cold enough to not freeze me and at the same time, not cause me to get so lightheaded. If I got lightheaded, I had to put the water on cold as possible and squat down, in the shower. It was hell.

I take a lot of vitamins and supplements and it seems to help. I have issues randomly now (sometimes, when standing, it just occurs after a random period of time), but it’s not as consistent as when I was in the military. Maybe it was caused by the boot camp vaccines, or maybe the climate. I also occasionally get the sensation in the shower, but not as bad. I can’t take long relaxing baths because I get that lightheaded and worry about passing out in the bath.

My menses makes me vomit and have this issue massively bad, but also, this, only very occasionally...I think it’s only happened a few times in my life, but it is very scary.

If I have any stomach pain, my vagus nerve reacts and my blood pressure drops off. Makes it hard to walk to and from the bathroom without getting tunnel vision blackness.

The other thing is when it goes on, my hands and feet, starting from tips of toes and fingers, get very tingly, as though I sat on them for a long time, but without the painful tingly pain, it just feels like static and it moves up my limbs and to my face.

The whole experience isn’t pleasant, and maybe I have a vasovagal syncope that isn’t POTS, but it still sucks, it can make things so difficult, even basic care becomes impossible when it is happening.

The most recent menses induced incident, I was so bad off that I couldn’t prepare food to eat, and it was too much just to go to the bathroom to be sick.

The lightheaded feeling that I get makes it very difficult not to vomit, pain or not. Also, when this is happening, my body struggles to digest protein, so I will frequently get sick with a meal I had over 12 hours prior.

So that’s the novelette of my experience.
Ghosthuntermaria

User ID: 79245130
United States
05/02/2021 07:51 AM

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Re: Does anyone here have POTS or know anyone with it?
My daughter has pots. Has had it for about 15 years (she's 29 now). The main thing is that she has to be careful when getting up from any seated or lying position. Pretty much any time she sits up or stands up. When she gets out of bed in the morning she has to get up slowly and sit for a few minutes. Then she can get out of bed. Getting up from a seated position is easier. She just needs to do it a bit slower than normal and make sure there's something to hold on to.
POTS can seem scary but it's manageable.
hf
There's always a bit of truth in everything no matter how crazy it seems.
Anonymous Coward
User ID: 77896303
United States
05/02/2021 07:54 AM
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Re: Does anyone here have POTS or know anyone with it?
POTS - sounds like a disease that cannabis kills might get.

lmao

Please consider this a bump and not an intrusion into your post.
 Quoting: FishingWithFredo


yeah its sure a silly sounding name for something that causes a lot of distressing symptms.
 Quoting: Rasen1



I went and briefly read about it.

Sorry for those affected.

This is a legit bump.

bump
Anonymous Coward
User ID: 80071916
United States
05/02/2021 07:55 AM
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Re: Does anyone here have POTS or know anyone with it?
You can still get a wire tap on POTS.
 Quoting: Nexus-9


I always thought POTS origin was plain old telephone service, but I guess it goes back further to post office telephone service? As for the other POTS, for years I thought I had something like that, but actually it was undiagnosed sleep apnea messing up how my body was regulating circulation. I figured it out with a $30 recording pulse ox ordered online.
Krakalakin

User ID: 80270462
United States
05/02/2021 07:56 AM

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Re: Does anyone here have POTS or know anyone with it?
generally I find it more reliable than most voip as it is a regulated utility.

Cellular quality is almost equivalent, but when the power goes out usually the landline stays active because the battery banks at the towers die.
Rasen1  (OP)

User ID: 79388617
United Kingdom
05/02/2021 07:57 AM
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Re: Does anyone here have POTS or know anyone with it?
POTS - sounds like a disease that cannabis kills might get.

lmao

Please consider this a bump and not an intrusion into your post.
 Quoting: FishingWithFredo


yeah its sure a silly sounding name for something that causes a lot of distressing symptms.
 Quoting: Rasen1



I went and briefly read about it.

Sorry for those affected.

This is a legit bump.

bump
 Quoting: FishingWithFredo


cheers
Anonymous Coward
User ID: 6936237
United States
05/02/2021 08:00 AM
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Re: Does anyone here have POTS or know anyone with it?
My daughter has pots, was recently diagnosed, but I think she's had it for years. I'm pretty sure she also has ehlers danlos syndrome. They seem to go together for some people. It involves much more than heart rate and blood pressure. She feels bad much of the time. If she wears her compression socks, stays well hydrated, doubles her salt intake and takes her medicine, she mostly keeps it under control.
todaysnewnormal

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05/02/2021 08:02 AM
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Re: Does anyone here have POTS or know anyone with it?
You should check out this page (short read) - [link to www.hormonesmatter.com]

Dr. Lonsdale is VERY smart and has done lots of research. Put aside whether or not your POTS was or was not triggered by Gardasil and look at the info he presents. Lots of great information on his website. Definitely worth considering if thiamine (Vitamin B1) would help.
Anonymous CLEC
User ID: 70244994
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05/02/2021 08:11 AM
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Re: Does anyone here have POTS or know anyone with it?
You can still get a wire tap on POTS.
 Quoting: Nexus-9


I always thought POTS origin was plain old telephone service, but I guess it goes back further to post office telephone service? As for the other POTS, for years I thought I had something like that, but actually it was undiagnosed sleep apnea messing up how my body was regulating circulation. I figured it out with a $30 recording pulse ox ordered online.
 Quoting: Anonymous Coward 80071916


Dumbfuck youngling and medical douchebags trod upon our copper based tech acronyms.
No respect for history, they shit all over it in their desire to ;'make our mark' stupid youngling.
Anonymous Coward
User ID: 52675620
United Kingdom
05/02/2021 08:15 AM
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Re: Does anyone here have POTS or know anyone with it?
OP are you taking quetiapine?
Anonymous Coward
User ID: 52675620
United Kingdom
05/02/2021 08:16 AM
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Re: Does anyone here have POTS or know anyone with it?
You can still get a wire tap on POTS.
 Quoting: Nexus-9


I always thought POTS origin was plain old telephone service, but I guess it goes back further to post office telephone service? As for the other POTS, for years I thought I had something like that, but actually it was undiagnosed sleep apnea messing up how my body was regulating circulation. I figured it out with a $30 recording pulse ox ordered online.
 Quoting: Anonymous Coward 80071916


Dumbfuck youngling and medical douchebags trod upon our copper based tech acronyms.
No respect for history, they shit all over it in their desire to ;'make our mark' stupid youngling.
 Quoting: Anonymous CLEC 70244994


plain old telephone system
Anonymous Coward
User ID: 80220497
05/02/2021 08:22 AM
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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

Anonymous Coward
User ID: 80306160
United Kingdom
05/02/2021 12:20 PM
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Re: Does anyone here have POTS or know anyone with it?
OP are you taking quetiapine?
 Quoting: Anonymous Coward 52675620


no, is it any good?
Anonymous Coward
User ID: 80306160
United Kingdom
05/02/2021 12:21 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





GLP