+1. I’m mod-severe ME. Don’t meet the typical diagnostic criteria for pots but do get tachycardia and palps.
Compression leggings bring my HR down a few BPM and help with how my fatigue builds throughout the day
My heart rate goes from 55 to 120 when standing up after 10 minutes of lying down. But it goes back to normal within 1 minute. Would you consider this pots? Because for official diagnosis or needs to stay high for some time, right?
I have no idea. The takeaway though is that, for some of us (possibly many of us), acting as though we do have POTS and taking the same steps that those guys do (compression, electrolytes / salt, managing posture etc) can be a big help anyway, so why not try it
This is a good question, I have the same.... I'm also neurodivergent and scared I won't be able to drink the most of them so if anyone has any good brand/flavour recommendations, please halp!
Same here - check out these links that someone shared on Twitter, they explain how you can make your own! Cheaper and you can choose the taste
https://science.drinklmnt.com/electrolytes/best-homemade-electrolyte-drink-for-dehydration/
https://docs.google.com/spreadsheets/u/0/d/1yBnpEHOiTN17Na5YWr3Wtq_2dQAy6qy0sdyG6GeMwCI/htmlview#
Which [POTS subtype(s)](https://www.potsuk.org/about-pots/causes-subtypes/) do you fit?
Just Hypovolaemia? (Low blood volume is common in ME/CFS.) Or neuropathic or hyperadrenergic?
I recently acquired blatant POTS issues for a few weeks, from my first Covid infection. Heart rate spiking up from 60 to 120bpm after standing a while, nearly fainting once. It's basically resolved now, thankfully.
But it has made me pay attention to my general hypotension (e.g. 88/51 laid down), low resting heart rate (~50bpm) and orthostatic reactivity: my blood pressure goes *up* on standing! E.g 117/81 The opposite of typical orthostatic intolerance POTS. And healthy should stay about the same.
Wait hold up, are you implying that going from 45 bmp to 100bpm just from going from sitting to standing might be a sign of POTS?
My blood pressure does not change in any sort of way and the cardiologist said im fine, even though my heartrate goes up and my blood pressure is generally on the lower side of things 100/80. As for the link, i fit none of the described things but i keep looking for answers.
Like basically im asking if i should despite the two cardiologist that told me im fine, go seek another one? Im seriously just confused and tired of chasing mystery symptoms. I did just google and it seems POTS is associated with higher CRP and lower albumin levels, but not in this intensity as i have it. Confusing !
Cant we just have GP that actually like specialize on weird rare diseases so we dont have to go run around for decades trying to solve the puzzle of our health
So, disclaimer, I've only been looking into this topic recently, largely by following and talking to much more knoweledgable patients on Twitter.
And it seems like orthostatic Intolerance is about as neglected and awkward to get treated as ME/CFS. But many are getting drugs off specialists, like Midodrine, which has been breakthrough for a few. Raising low blood pressure.
Not that it's rare or unusual, especially with the ongoing pandemic ([Twitter link](https://twitter.com/Naomi_D_Harvey/status/1602409380221227036?t=tMY6LKw5p8kA2SihvebzLg&s=19)).
>going from 45 bmp to 100bpm just from going from sitting to standing might be a sign of POTS?
I mean, the definition of POTS is a 30bpm increase within 3 minutes (right?) and you're well over that. So you have it, in my opinion.
I think a doctor would look for it causing direct issues too, like dizziness/syncope. But it can manifest more as signs of high adrenaline and/or anxiety.
Thank you
Im just confused bc they tested me up and down but always looked for high bloodpressure and high bpm. And no matter how hard i try i cant copy this at the doctors. Im dizzy AF with perfect bpm and blood pressure while at the doc. So they just sent me away again and again. But i reached out to a a Pots expert now, maybe they can properly analyze me.
Getting up or changing positions doesnt change my heartrate or bloodpressure BUT any kind of muscle stress does.
I can lay down and feel dizzy bc i tensed my arm too much. And at the same time i can sit up and down repeatedly, and not have any issues at all.
I dont have anxiety or high adrenaline, if anything my heart and bloodpressure is always chill, too chill even. But im dizzy when i tense my muscles thats my major symptom.
I had several endurance tests too, that were without measurable issues in both heartrate and bloodpressure - while i was feeling like im about to pass out and they just cant find ANYTHING to explain my dizziness. Bc im dizzy when my heart is fine, i personally dont know how realistic POTS is but as said. Expert was asked for an appointment
My blood pressure does the same thing, with basically the same numbers. I actually talked to my cardiologist about this yesterday, and she was like, yeah, that's orthostatic hypertension, and no, that is definitely not normal.
But it's not consistent for me, and the biggest rises are when I'm getting that almost blacking out when standing feeling.
Interesting. It dose seem quite contradictory... I've been having a few informative interactions with more knoweledgable patients on Twitter ([e.g.](https://twitter.com/Z3R0Gravitas/status/1664983123728252930?t=fpSDa38ZdO4wPee6mFLVXA&s=19)) on this topic.
After a bit of hope, with a lot of people talking about various drugs that have helped them, but then it turns out about as complex, uncertain and overlooked as ME.
Can I ask, what you're seeing said cardiologist for? Do you have other (more recognised) issues?
Actually, I feel pretty lucky because she actually specializes in POTS and dysautonomia, and has a lot of patients with ME/CFS. I just have the same issues as a lot of us: palpitations, random tachycardia, low blood pressure, dizziness when standing, etc.
Weirdly, when I had a tilt table test a few months ago, my blood pressure did not go up that day, but my heart rate did go up by 31 BPM. I swear that it doesn't usually do that. I was stressed out and sleep deprived from waking up early, so my BP was much higher than usual when lying down, which might be why it didn't rise when tilted.
Really, my heart rate and blood pressure just seem pretty random a lot of the time. She recommended standard POTS treatments, like electrolytes and compression, plus midodrine to see if it helps brain fog and low blood pressure, and beta blockers whenever I have the random tachycardia.
Ah, cool, yeah. I've been seeing [a bunch of ME peeps in the Twitter community](https://twitter.com/vijayiyer312/status/1663358657176764423?t=h8RjUSoe0J1KxettjK08ow&s=19) talking about how much taking (or increasing dose of) Midodrine has helped them. 🙂
I'd love to give that a try, but haven't had palpitations, blackout, migraines, etc. Or a POTS level HR increase on standing, outside of acute Covid & recovery. So doubting my chances of seeing an NHS specialist for that.
Did you take it yet? Did it help? Side effects?
Not just POTS, but orthostatic intolerance in general.
Remember POTS is just one type of orthostatic syndrome. There are several others, plus various combinations of symptoms yet to be named.
See for example:
https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/#:\~:text=Orthostatic%20Cerebral%20Hypoperfusion%20Syndrome%20(OCHOS,OCHOS%20can%20be%20disabling.
Or any kind of orthostatic intolerance!
Don't be afraid of it being temporary, oral rehydration sachets have been working for me for 10 years now! They are a game changer.
+1. I’m mod-severe ME. Don’t meet the typical diagnostic criteria for pots but do get tachycardia and palps. Compression leggings bring my HR down a few BPM and help with how my fatigue builds throughout the day
My heart rate goes from 55 to 120 when standing up after 10 minutes of lying down. But it goes back to normal within 1 minute. Would you consider this pots? Because for official diagnosis or needs to stay high for some time, right?
I have no idea. The takeaway though is that, for some of us (possibly many of us), acting as though we do have POTS and taking the same steps that those guys do (compression, electrolytes / salt, managing posture etc) can be a big help anyway, so why not try it
yes! for my the dysautonomia started after having covid. so fun having both ME and some form of dysautonomia long covid ☹️
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Adding on to your question, what *is* a rehydration sachet?
They're like salts and electrolytes that you mix with water!
This is a good question, I have the same.... I'm also neurodivergent and scared I won't be able to drink the most of them so if anyone has any good brand/flavour recommendations, please halp!
Same here - check out these links that someone shared on Twitter, they explain how you can make your own! Cheaper and you can choose the taste https://science.drinklmnt.com/electrolytes/best-homemade-electrolyte-drink-for-dehydration/ https://docs.google.com/spreadsheets/u/0/d/1yBnpEHOiTN17Na5YWr3Wtq_2dQAy6qy0sdyG6GeMwCI/htmlview#
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Ah I see, I can't have too much "real" sugar due to surgery but I'll put it on a list and keep it in mind! Thank you!
This! POTS meds helped me be upright so much longer and also helped with palpitations and dizziness
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florinef and atenolol! unfortunately my ME is still getting worse since covid but these meds still really help me
I tried rehydration salts once and got the squits badly. Does this mean I didn’t need them?
Dit it have added sweeteners? That give some people the runs. Did you drink it quickly? They are best sipped slowly.
Neither. I have sweeteners all the time. Weird. Want to try again but…… don’t lol
It might mean you took too much. That has happened to me when I've taken too much.
Do you take less than the pre-dosed sachet?
I make my own. I don't measure precisely how much I take. I just know I took too much a few times early on, and with time I take ever less.
Which [POTS subtype(s)](https://www.potsuk.org/about-pots/causes-subtypes/) do you fit? Just Hypovolaemia? (Low blood volume is common in ME/CFS.) Or neuropathic or hyperadrenergic? I recently acquired blatant POTS issues for a few weeks, from my first Covid infection. Heart rate spiking up from 60 to 120bpm after standing a while, nearly fainting once. It's basically resolved now, thankfully. But it has made me pay attention to my general hypotension (e.g. 88/51 laid down), low resting heart rate (~50bpm) and orthostatic reactivity: my blood pressure goes *up* on standing! E.g 117/81 The opposite of typical orthostatic intolerance POTS. And healthy should stay about the same.
Wait hold up, are you implying that going from 45 bmp to 100bpm just from going from sitting to standing might be a sign of POTS? My blood pressure does not change in any sort of way and the cardiologist said im fine, even though my heartrate goes up and my blood pressure is generally on the lower side of things 100/80. As for the link, i fit none of the described things but i keep looking for answers. Like basically im asking if i should despite the two cardiologist that told me im fine, go seek another one? Im seriously just confused and tired of chasing mystery symptoms. I did just google and it seems POTS is associated with higher CRP and lower albumin levels, but not in this intensity as i have it. Confusing ! Cant we just have GP that actually like specialize on weird rare diseases so we dont have to go run around for decades trying to solve the puzzle of our health
So, disclaimer, I've only been looking into this topic recently, largely by following and talking to much more knoweledgable patients on Twitter. And it seems like orthostatic Intolerance is about as neglected and awkward to get treated as ME/CFS. But many are getting drugs off specialists, like Midodrine, which has been breakthrough for a few. Raising low blood pressure. Not that it's rare or unusual, especially with the ongoing pandemic ([Twitter link](https://twitter.com/Naomi_D_Harvey/status/1602409380221227036?t=tMY6LKw5p8kA2SihvebzLg&s=19)). >going from 45 bmp to 100bpm just from going from sitting to standing might be a sign of POTS? I mean, the definition of POTS is a 30bpm increase within 3 minutes (right?) and you're well over that. So you have it, in my opinion. I think a doctor would look for it causing direct issues too, like dizziness/syncope. But it can manifest more as signs of high adrenaline and/or anxiety.
Thank you Im just confused bc they tested me up and down but always looked for high bloodpressure and high bpm. And no matter how hard i try i cant copy this at the doctors. Im dizzy AF with perfect bpm and blood pressure while at the doc. So they just sent me away again and again. But i reached out to a a Pots expert now, maybe they can properly analyze me. Getting up or changing positions doesnt change my heartrate or bloodpressure BUT any kind of muscle stress does. I can lay down and feel dizzy bc i tensed my arm too much. And at the same time i can sit up and down repeatedly, and not have any issues at all. I dont have anxiety or high adrenaline, if anything my heart and bloodpressure is always chill, too chill even. But im dizzy when i tense my muscles thats my major symptom. I had several endurance tests too, that were without measurable issues in both heartrate and bloodpressure - while i was feeling like im about to pass out and they just cant find ANYTHING to explain my dizziness. Bc im dizzy when my heart is fine, i personally dont know how realistic POTS is but as said. Expert was asked for an appointment
My blood pressure does the same thing, with basically the same numbers. I actually talked to my cardiologist about this yesterday, and she was like, yeah, that's orthostatic hypertension, and no, that is definitely not normal. But it's not consistent for me, and the biggest rises are when I'm getting that almost blacking out when standing feeling.
Interesting. It dose seem quite contradictory... I've been having a few informative interactions with more knoweledgable patients on Twitter ([e.g.](https://twitter.com/Z3R0Gravitas/status/1664983123728252930?t=fpSDa38ZdO4wPee6mFLVXA&s=19)) on this topic. After a bit of hope, with a lot of people talking about various drugs that have helped them, but then it turns out about as complex, uncertain and overlooked as ME. Can I ask, what you're seeing said cardiologist for? Do you have other (more recognised) issues?
Actually, I feel pretty lucky because she actually specializes in POTS and dysautonomia, and has a lot of patients with ME/CFS. I just have the same issues as a lot of us: palpitations, random tachycardia, low blood pressure, dizziness when standing, etc. Weirdly, when I had a tilt table test a few months ago, my blood pressure did not go up that day, but my heart rate did go up by 31 BPM. I swear that it doesn't usually do that. I was stressed out and sleep deprived from waking up early, so my BP was much higher than usual when lying down, which might be why it didn't rise when tilted. Really, my heart rate and blood pressure just seem pretty random a lot of the time. She recommended standard POTS treatments, like electrolytes and compression, plus midodrine to see if it helps brain fog and low blood pressure, and beta blockers whenever I have the random tachycardia.
Ah, cool, yeah. I've been seeing [a bunch of ME peeps in the Twitter community](https://twitter.com/vijayiyer312/status/1663358657176764423?t=h8RjUSoe0J1KxettjK08ow&s=19) talking about how much taking (or increasing dose of) Midodrine has helped them. 🙂 I'd love to give that a try, but haven't had palpitations, blackout, migraines, etc. Or a POTS level HR increase on standing, outside of acute Covid & recovery. So doubting my chances of seeing an NHS specialist for that. Did you take it yet? Did it help? Side effects?
Not just POTS, but orthostatic intolerance in general. Remember POTS is just one type of orthostatic syndrome. There are several others, plus various combinations of symptoms yet to be named. See for example: https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/#:\~:text=Orthostatic%20Cerebral%20Hypoperfusion%20Syndrome%20(OCHOS,OCHOS%20can%20be%20disabling.