So for those who don't know, since around June, I've been struggling with some unknown "heart issue". Though I am pretty sure it's actually HyperPOTS since my heart tests come back okay. At one point it got so disabling that I needed to use a wheelchair.
Well, today I shopped without mobilty aid! ♡
Well, today I shopped without mobilty aid! ♡
October 25, 2024 at 4:36 PM
So for those who don't know, since around June, I've been struggling with some unknown "heart issue". Though I am pretty sure it's actually HyperPOTS since my heart tests come back okay. At one point it got so disabling that I needed to use a wheelchair.
Well, today I shopped without mobilty aid! ♡
Well, today I shopped without mobilty aid! ♡
Clonidine? I had similar and switched to extended release quanfacine and have really liked it. I have MCAS and Hyperpots.
August 20, 2025 at 2:02 PM
Clonidine? I had similar and switched to extended release quanfacine and have really liked it. I have MCAS and Hyperpots.
Somebody here with #HyperPOTS and #Bladderproblems?
Usually i do have an OAB kind of #neurogenicbladder, but with taking #Clonidine my #ReflexBladder kind of problems seem to happen more often.
Especially when, after exhaustion, sitting down with legs up. Unpredictable. Unstoppable. #MECFS #PNP
Usually i do have an OAB kind of #neurogenicbladder, but with taking #Clonidine my #ReflexBladder kind of problems seem to happen more often.
Especially when, after exhaustion, sitting down with legs up. Unpredictable. Unstoppable. #MECFS #PNP
August 16, 2025 at 1:07 PM
Somebody here with #HyperPOTS and #Bladderproblems?
Usually i do have an OAB kind of #neurogenicbladder, but with taking #Clonidine my #ReflexBladder kind of problems seem to happen more often.
Especially when, after exhaustion, sitting down with legs up. Unpredictable. Unstoppable. #MECFS #PNP
Usually i do have an OAB kind of #neurogenicbladder, but with taking #Clonidine my #ReflexBladder kind of problems seem to happen more often.
Especially when, after exhaustion, sitting down with legs up. Unpredictable. Unstoppable. #MECFS #PNP
It was for me, at least, and I found some references to it in the literature. Methyldopa is the preferred first treatment for hyperPOTS in people with MCAS, but it hasn't been available in the US since early pandemic (this may have changed very very recently but I haven't verified yet)
December 5, 2023 at 1:37 AM
It was for me, at least, and I found some references to it in the literature. Methyldopa is the preferred first treatment for hyperPOTS in people with MCAS, but it hasn't been available in the US since early pandemic (this may have changed very very recently but I haven't verified yet)
👉👈 may I join this starter pack?
Am someone who struggles with HyperPOTS.
Am someone who struggles with HyperPOTS.
October 23, 2024 at 12:45 AM
👉👈 may I join this starter pack?
Am someone who struggles with HyperPOTS.
Am someone who struggles with HyperPOTS.
And ice isn’t just great for getting rid of inflammation. There are many forms of ice that help w/ overheating from POTS (especially my version, hyperPOTS - which does indeed sound like something Ron Popeil would sell). I ♥️ ice head wraps made for migraines and this ice face roller for cooling down.
August 14, 2023 at 6:20 PM
And ice isn’t just great for getting rid of inflammation. There are many forms of ice that help w/ overheating from POTS (especially my version, hyperPOTS - which does indeed sound like something Ron Popeil would sell). I ♥️ ice head wraps made for migraines and this ice face roller for cooling down.
It helps with bp and hyperadrenergic responses, which I need because I have hyperPOTS (and yes, ugh, the tachycardia)
September 18, 2023 at 6:59 AM
It helps with bp and hyperadrenergic responses, which I need because I have hyperPOTS (and yes, ugh, the tachycardia)
I miss it a lot, because sometimes the ADHD executive dysfunction/dopamine desert is hard to differentiate from ME exhaustion, and I can't be sure if pushing against it is going to be fine or if it will hurt. But with my hyperPOTS, we don't want me on stimulants. 🥲
July 12, 2024 at 2:13 PM
I miss it a lot, because sometimes the ADHD executive dysfunction/dopamine desert is hard to differentiate from ME exhaustion, and I can't be sure if pushing against it is going to be fine or if it will hurt. But with my hyperPOTS, we don't want me on stimulants. 🥲
Oh, I forgot to mention this is me, amongst other things. Howdy, my fellow zebras.
#EDS #MCAD #POTS except I'm #hyperPOTS so beware my occasional salty replies, it's the adrenaline.
(Also, I just ran out of fucks to give at 50.) 🤷🏻♀️🤸🏻♀️🌈
#EDS #MCAD #POTS except I'm #hyperPOTS so beware my occasional salty replies, it's the adrenaline.
(Also, I just ran out of fucks to give at 50.) 🤷🏻♀️🤸🏻♀️🌈
December 8, 2024 at 4:13 AM
Oh, I forgot to mention this is me, amongst other things. Howdy, my fellow zebras.
#EDS #MCAD #POTS except I'm #hyperPOTS so beware my occasional salty replies, it's the adrenaline.
(Also, I just ran out of fucks to give at 50.) 🤷🏻♀️🤸🏻♀️🌈
#EDS #MCAD #POTS except I'm #hyperPOTS so beware my occasional salty replies, it's the adrenaline.
(Also, I just ran out of fucks to give at 50.) 🤷🏻♀️🤸🏻♀️🌈
Last year my ME went very severe and POTS turned to hyperPOTS. Was flat on my back for a long time. Still having a go but can sit up here and there with support. Short answer: Thankful to be here. How are you? Hoping you’re staying warm and cozy. 💙
November 16, 2024 at 8:28 PM
Last year my ME went very severe and POTS turned to hyperPOTS. Was flat on my back for a long time. Still having a go but can sit up here and there with support. Short answer: Thankful to be here. How are you? Hoping you’re staying warm and cozy. 💙
Mainly, I just don't know what my dysautonomia is doing. Sometimes I have what on paper looks like hyperPOTS, other times I get low blood pressure. Symptoms seem worse with low blood pressure more than high HR, but even on ivabradine, my HR is getting to 170 sometimes
August 2, 2025 at 4:50 PM
Mainly, I just don't know what my dysautonomia is doing. Sometimes I have what on paper looks like hyperPOTS, other times I get low blood pressure. Symptoms seem worse with low blood pressure more than high HR, but even on ivabradine, my HR is getting to 170 sometimes
--and methyldopa has been unavailable in the US since 2021 or so thanks to pandemic manufacturing issues taking out the sole supplier. So I was really glad clonidine (mostly) works for me since I have hyperPOTS and MCAS combined, sigh.
October 4, 2024 at 1:33 PM
--and methyldopa has been unavailable in the US since 2021 or so thanks to pandemic manufacturing issues taking out the sole supplier. So I was really glad clonidine (mostly) works for me since I have hyperPOTS and MCAS combined, sigh.
Dat ik de criteria voor POTS (en daarbij hyperPOTS) vrij mild vind zegt wellicht meer iets over mijn klachten/meetuitslagen dan over de diagnose criteria 🙈
May 7, 2025 at 12:33 PM
Dat ik de criteria voor POTS (en daarbij hyperPOTS) vrij mild vind zegt wellicht meer iets over mijn klachten/meetuitslagen dan over de diagnose criteria 🙈
I used not be able to wear a mask if talking or walking (only if sitting still) — when I had low SpO2 & was wearing a 4-layer headstrap surgical that fitted well to my face shape. Now, I’m having no trouble, with normal-range SpO2 plus N95.
Context: mecfs, HyperPOTS, mcas, lupus
3/3
Context: mecfs, HyperPOTS, mcas, lupus
3/3
November 12, 2024 at 12:22 AM
I used not be able to wear a mask if talking or walking (only if sitting still) — when I had low SpO2 & was wearing a 4-layer headstrap surgical that fitted well to my face shape. Now, I’m having no trouble, with normal-range SpO2 plus N95.
Context: mecfs, HyperPOTS, mcas, lupus
3/3
Context: mecfs, HyperPOTS, mcas, lupus
3/3
So I will continue to assume I have it for now. I hope to seek out specifically a specialist in POTS (preferably HyperPOTS specialist if possible) as soon as I can find one near me. Which sadly might be difficult.
I've been given the go ahead to start my testosterone again and I plan on doing so.
I've been given the go ahead to start my testosterone again and I plan on doing so.
November 15, 2024 at 3:28 PM
So I will continue to assume I have it for now. I hope to seek out specifically a specialist in POTS (preferably HyperPOTS specialist if possible) as soon as I can find one near me. Which sadly might be difficult.
I've been given the go ahead to start my testosterone again and I plan on doing so.
I've been given the go ahead to start my testosterone again and I plan on doing so.
Beta blockers:
💊 Examples: Propranolol, metoprolol, nadolol
🧪 Main mechanism: Blocking the effect of stress hormones (adrenaline/noradrenaline)
Beta blockers tend to both lower heart rate and lower blood pressure. For this reason, they are often a better choice for hyperPOTS
💊 Examples: Propranolol, metoprolol, nadolol
🧪 Main mechanism: Blocking the effect of stress hormones (adrenaline/noradrenaline)
Beta blockers tend to both lower heart rate and lower blood pressure. For this reason, they are often a better choice for hyperPOTS
November 15, 2024 at 6:29 PM
Beta blockers:
💊 Examples: Propranolol, metoprolol, nadolol
🧪 Main mechanism: Blocking the effect of stress hormones (adrenaline/noradrenaline)
Beta blockers tend to both lower heart rate and lower blood pressure. For this reason, they are often a better choice for hyperPOTS
💊 Examples: Propranolol, metoprolol, nadolol
🧪 Main mechanism: Blocking the effect of stress hormones (adrenaline/noradrenaline)
Beta blockers tend to both lower heart rate and lower blood pressure. For this reason, they are often a better choice for hyperPOTS
Took 45 minutes until I could stand up again without immediate pre-syncope. Was still woozy with mild tunnel vision walking to the car, but at last safe to go. And when I got in the car my seated bp was 115/81, which is much better.
First full blown public HyperPots episode. Not fun!!!
First full blown public HyperPots episode. Not fun!!!
July 14, 2025 at 9:20 PM
Took 45 minutes until I could stand up again without immediate pre-syncope. Was still woozy with mild tunnel vision walking to the car, but at last safe to go. And when I got in the car my seated bp was 115/81, which is much better.
First full blown public HyperPots episode. Not fun!!!
First full blown public HyperPots episode. Not fun!!!
👉👈 may I join this starter pack?
I struggle with HyperPOTS.
I struggle with HyperPOTS.
October 23, 2024 at 12:47 AM
👉👈 may I join this starter pack?
I struggle with HyperPOTS.
I struggle with HyperPOTS.
All good. Totally fine. Definitely not about to pass out.
#pots #hyperpots #dysautonomia #chronicillness
#pots #hyperpots #dysautonomia #chronicillness
November 18, 2024 at 1:00 AM
All good. Totally fine. Definitely not about to pass out.
#pots #hyperpots #dysautonomia #chronicillness
#pots #hyperpots #dysautonomia #chronicillness
feeling like an utter failure because my body is breaking down. I know its not the same as hyperPOTS, but I'm commiserating with you on the difficult to accept part.
I hope you get some relief soon, and you know I'm here for you no matter what bby. ILU, having a wheelchair is not a failing on you.
I hope you get some relief soon, and you know I'm here for you no matter what bby. ILU, having a wheelchair is not a failing on you.
April 26, 2025 at 5:22 PM
feeling like an utter failure because my body is breaking down. I know its not the same as hyperPOTS, but I'm commiserating with you on the difficult to accept part.
I hope you get some relief soon, and you know I'm here for you no matter what bby. ILU, having a wheelchair is not a failing on you.
I hope you get some relief soon, and you know I'm here for you no matter what bby. ILU, having a wheelchair is not a failing on you.
ah, I have envy! My psych is reluctant to give me any stims because of my hyperPOTS and ME/CFS. just really cautious about potential negative effects.
at least duloxetine/Cymbalta gives me enough space to recognize the RSD is in play, and tones down the extremes a lot.
at least duloxetine/Cymbalta gives me enough space to recognize the RSD is in play, and tones down the extremes a lot.
August 16, 2025 at 6:02 PM
ah, I have envy! My psych is reluctant to give me any stims because of my hyperPOTS and ME/CFS. just really cautious about potential negative effects.
at least duloxetine/Cymbalta gives me enough space to recognize the RSD is in play, and tones down the extremes a lot.
at least duloxetine/Cymbalta gives me enough space to recognize the RSD is in play, and tones down the extremes a lot.
it could be hyperPOTS, then! or not. it's treated the same way, except for being more cautious around salt
November 14, 2023 at 5:32 AM
it could be hyperPOTS, then! or not. it's treated the same way, except for being more cautious around salt
Mito supps: Oxaloacetate, NAD+ subcut, MitoQ, bicarb soda baths (offsets lactate from being over anaerobic threshold), liposomal glutathione.
Other supps: Salt tablets (HyperPOTS), melatonin, olive leaf (antiviral), lipo Vit C, Bioceuticals Migraine Care (magnesium,feverfew)
5/6
Other supps: Salt tablets (HyperPOTS), melatonin, olive leaf (antiviral), lipo Vit C, Bioceuticals Migraine Care (magnesium,feverfew)
5/6
November 15, 2024 at 4:11 AM
Mito supps: Oxaloacetate, NAD+ subcut, MitoQ, bicarb soda baths (offsets lactate from being over anaerobic threshold), liposomal glutathione.
Other supps: Salt tablets (HyperPOTS), melatonin, olive leaf (antiviral), lipo Vit C, Bioceuticals Migraine Care (magnesium,feverfew)
5/6
Other supps: Salt tablets (HyperPOTS), melatonin, olive leaf (antiviral), lipo Vit C, Bioceuticals Migraine Care (magnesium,feverfew)
5/6
Guanfacine has been great for my hyperpots without being an issues for my MCAS.
June 19, 2025 at 8:46 PM
Guanfacine has been great for my hyperpots without being an issues for my MCAS.
Hey #NEISvoid, talk to me about hyperPOTS and MCAS?
I have a sinking feeling my own POTS has morphed into the hyperadrenergic kind
What are y'all's tips and tricks, because salt is wrecking me rn and I get pressure urticaria from compression garments
I have a sinking feeling my own POTS has morphed into the hyperadrenergic kind
What are y'all's tips and tricks, because salt is wrecking me rn and I get pressure urticaria from compression garments
February 11, 2025 at 5:55 PM
Hey #NEISvoid, talk to me about hyperPOTS and MCAS?
I have a sinking feeling my own POTS has morphed into the hyperadrenergic kind
What are y'all's tips and tricks, because salt is wrecking me rn and I get pressure urticaria from compression garments
I have a sinking feeling my own POTS has morphed into the hyperadrenergic kind
What are y'all's tips and tricks, because salt is wrecking me rn and I get pressure urticaria from compression garments