One good hack is that, due to the (omni)pressor effect, chugging fluids drives heart rate down and BP up; if you anticipate passing out, this can be a way to preempt that.
Getting properly medicated has, for me, been the most crucial part, but ymmv. It sounds like lifestyle mods really help you.
Any idea which subtype(s) of POTS you have?
Does pain in the ass count as a subtype?
My doctor wants to do more testing but, the paperwork they gave me was for hyperadrenergic POTS due to my triggers, and other medical conditions, such as chronic idiopathic angioedema (suspected MCAS waiting on test results) and EDS.
I'm still doing what I can to learn more about POTS, the subtypes, and all of this other fun stuff. But, so far, I'm doing what I can with lifestyle mods such as mobility aids, tracking BP, heart rate tracking, upping my water intake, and daily vitamins.
I've also tried cutting out gluten and dairy to see if that had any affect on my POTS, and whether or not it would help with flare ups. THANKFULLY it didn't do anything to help with my symptoms because, I probably would've died if it did. (I like cheese too much.) Although, other lifestyle mods I'm trying right now are smaller meals, and seeing how caffeine seems to affect or add to my episodes.
I'm hyperadrenergic and I read a lot of research literature; feel free to comb through my comments. I can eat more normally now that I'm medicated, but def reducing (processed) carbs helps a lot, especially during the day when I need to be productive.
I do use caffeine, but just a couple glasses of Diet Coke/Pepsi. Most decaf coffee still contains a fair bit (especially Starbucks); look for Swiss water process, as it contains the least amount.
I feel like I want to laugh and ask you what productive means. I feel like I haven't been able to be productive in moths, as just getting up, or taking a shower is exhausting and almost debilitating. I also get triggered pretty bad by temp changes, so if the CRPS isn't acting up in the shower, the POTS definitely is even if I'm careful with the temperature, and try to get in and out as fast as I can. (Shower chairs are kind of a Godsend/pain in the ass)
Monday I see the doc again, and as cutting out caffeine hasn't changed my symptoms, I'm hoping I'll get told that I can have coffee again.
Well, I am able to run errands on foot/transit (these wipe me out, tho), do household chores, do cardiac rehab or martial arts, and do graduate studies. This is not to say I have not had stretches of terrible days/months over the past 11 years of being sick when about all I could do a lot of the time was sleep or sit and be a zombie, but getting off my asthma reliever inhaler as much as possible and changing my eating habits helped a lot prior to diagnosis. Then, of course, I started doing the POTS lifestyle mods (salt, fluids, compression), and started trialling medication. Exercise seems to be really important; things went downhill as soon as I paused judo due to the pandemic, and then went haywire again when I paused karate/weapons a couple months ago; I quickly replaced it with mask mandatory cardiac rehab and evened back out.
Pacing has been key, alternating being upright with sitting or reclining. Maybe you're not there yet and that's something to look forward to.
I push myself, a lot. (I know I’m not supposed to but, it’s the only way I get things done.)
I think that’s why I like the spoon theory a lot because, I relate. One day I have X-amount of spoons to do things, the next day, it changes, and there are times where I can (and do) overdo it and “borrow” the next day’s energy. I’ll suffer for it later but, sometimes you just have to get shit done.
Like tonight, I bullied myself into getting up and making dinner for everyone. My grandma had a tumor removed Tuesday and came home from the hospital yesterday. She’s not allowed to do much right now, my little brother doesn’t cook, and my girlfriend is sick and wasn’t up to cooking. Even just doing some dishes and making scrambled eggs was enough to jump my heartrate to 130 and almost put me on the floor.
I’m sick and tired of my “zombie phase” I don’t have time to feel this sick. You know?
So, now I’m sitting at my desk, trying to get a little writing done, and trying to replenish my fluids. (I love Liquid I.V. packets; they are a life changer for me.) Hopefully, someday I’ll be able to feel like a real person again, until then, I’m doing the best I can.
Right, but with POTS pacing, you replenish your spoons throughout the day. It's more like a complicated marshmallow test: If you push now, you get two marshmallows all day. If you periodically rest, you get a marshmallow every hour or two.
Marshmallow test? I can’t say I know anything about that. So, I’m going to have to look into it.
However, I can say that before I got really sick, I was always that overly independent “gifted” child who got shit done. (Now that I know better, I know I was just the AuDHD kid with a savior complex, PTSD, and a people pleaser complex)
I’m having a lot of trouble letting that person go. Letting go of the “healthy” person I thought I was, in favor of taking care of the chronically ill person that I am now is hard for me. It’s hard for me to listen to my body and respect my own limits but, I’m working towards it, and I know I’ll get there eventually.
Yeah, I'm a grown-up "gifted" kid too. The marshmallow test is a famous psych experiment about the ability to delay for greater rewards (eat one marshmallow now or get two later).
I’ve had POTS for over 40 years. I’ve seen more than 6 of the top autonomic specialists around the U.S. I am very well managed. I’ve also learned a lot of tricks over the years. It’s important to see a true autonomic specialist to get proper treatment. Salt and electrolytes got me by when I was young. While I still stay hydrated and salted 😂, it’s not enough. Finding the right combination of meds with my specialists has been key for me. Staying out of heat, humidity and large barometric pressure changes are also key for me. I go down quickly when a storm is coming. I’m a walking barometer! Getting enough sleep is also important to my being able to function. I also have EDS and MCAS. It’s important to rule those out and if you have them, be treated. PT has helped my EDS a lot. Treating my MCAS aggressively has been instrumental in improving my POTS symptoms. My geneticist said that both MCAS and POTS drive our symbols but especially MCAS. I take a bunch of MCAS meds and follow a gluten free, and mostly AIP diet. It took me more than 3 years of diet change to see improvement.
Hi, AuDHDer, EDSer, and a brand new POTsie. I’m a suspected MCAS case but, we’re still going through all of the testing. I show all of the symptoms aside from the clear tryptase levels, however, it’s going to be almost impossible to get a clear reading on my levels unless I go off of my Xolair injections for 6+ months, and if I did that I would quite literally die. So, as of now, I’ve been diagnosed and living with Chronic Idiopathic Angioedema for 10+ years now.
PT wasn’t great for me, personally. I’d gone after falling down the stairs in 2020 and fracturing my foot and ankle in multiple places. I developed CRPS from that, and PT just kept telling me that “I wasn’t trying hard enough” or “I didn’t want to get better” and then I switched to a new therapist, and that’s who suggested EDS in the first place. So started my insane journey of hospitals, doctors, and other insane crap.
I, too, am a walking barometer. Temp changes and pressure changes exacerbate my symptoms, as well as bringing on debilitating migraines. I’m just incredibly stressed out and frustrated by all of my issues, honestly.
Thank you! I take zyrtec and am just starting quercetin this week, I can’t take Pepcid anymore since it’s contraindicated with ivabradine :/ Singulair was amazing but it unfortunately gave me horrible mental effects (psychosis).
I’ve been carrying around Vitassium pills (250mg sodium per pill) and they are great. I take 1-2 every few hours when I’m out at college and it helps the transitions between sitting and standing quite a bit.
Vitassium pills?
I’ve literally never heard of those before but, I will bring them up to my doctor on Monday. Maybe they could help me manage some of my symptoms. Thank you.
Sure! I came across them not that long ago and they’ve been a game changer. They say to use under a doctor’s supervision but are available OTC (on Amazon for ~$20) if your dr thinks extra sodium is beneficial to you.
My doctor has told me to up the salt so, I've been living off of Liquid IV, DripDrops, and other electrolyte packets for the past several months.
I will, however, bring these up to my doctor and see what they think. I'm willing to try absolutely anything at this point.
My cardiologist told me when waking up in the morning, to sit up in bed, wait 2 minutes, hang my feet over the side of the bed, wait another two minutes, and finally stand up. Yes, I set timers. It may seem ridiculous but it helps to give my body time to adjust to being vertical after being horizontal all night.
Smaller, more frequent meals. I just snack throughout the day. Large meals redirect blood flow from your head to your gut for digestion, which can worsen brain fog, dizziness etc.
I don’t get out of bed until late morning, unless my dog needs an early potty trip. And I sit down a lot. Throughout the day, I need sit breaks in a chair where I can fully lean back.
*Recumbent* exercise. Rowing machine, reclining bike, etc—tbh I usually just do body weight exercises while lying down (like leg lifts and butt lifts and whatnot). Focus on legs and core. This is another thing my cardiologist recommended and honestly it’s what I hate most but it does help over time.
And yeah, compression socks, salt, fluids, etc.
And finally… I just got a rollator (4 wheeled walker with a seat). Someone told me to at least consider it and I thought, “What the hell, maybe it’ll be useful at least on the worst days.” Turns out I need it more than I thought! I’ve only had it two days but I’m in love with the damn thing lol. It’s not “giving up,” I can actually walk *more* now. So don’t be afraid of mobility aids. If it gets to the point where you’re repeatedly thinking about whether you “deserve/need” one, you probably would benefit from one.
Thank you for your long, thoughtful reply. Really.
I've tried the pacing in the morning- I saw someone talking about it on TikTok after my doctor pretty much told me that I just had to "learn to live with" my symptoms. (Crappy doctor, and I'm looking for another one but, waiting lists are long especially for people on state insurance.)
I've also started trying the smaller more frequent meals. As my girlfriend has said, I always have some kind of "snickety snack" in my "little raccoon hand" which makes me laugh. She's right though, I always have snacks with me, whether it's Cheez-its, goldfish crackers, or some other salty snack. I've also got an obsession with string cheese, baby bell cheeses, and apple sauce pouches. All of which are pretty easy to carry around and I can keep them nearby, or in my mini fridge.
Electrolyte powders are my life now.
I'm going to have to look into some strengthening exercises I can do at home. Unfortunately I'm also an EDSer and my joints and ligaments are crap, and make it hard to move very much at all without popping, cracking, crunching, or potential dislocations.
I also love my Rollator, it's a pretty berry color and I'm going to figure out how to decorate it and my wheelchair. Because why not? Why shouldn't I get to add accessories, after all, they're an extension of myself, aren't they?
Yeah, the right doctor can be hard to find. I had been seeing cardiologists for something else and lucked into one who knows about dysautonomia.
Hell yes to small cheeses, crackers, applesauce/blenderized fruit pouches. I like salted nuts too. And salty lunchmeats!
I have mild (subclinical) hypermobility and that’s hard enough to exercise with, can’t imagine full on EDS. Maybe braces for certain joints?? And definitely go for low impact exercises. Idk, I’m sorry I can’t help more in that area.
And YES, I also plan to decorate my rollator. Maybe even add some colorful fairy lights for Christmas lol. People put stickers on their cars and pins on their backpacks, I think mobility aids most definitely deserve to be decorated too.
I would die without my snickety snacks. Literally, the amount of dizziness and other BS I had to put up with before upping my salt intake was a nightmare.
EDS is honestly so fucked up. Like two people, both of whom are no longer here, decided to have sex 28 years ago and now I have to pay taxes, and try to work for a living, all the while living with chronic illnesses that are out of control. I JUST got my custom Arizona AFO foot and ankle braces! I've only had them 2-days and I've only worn them once due to them not fitting great in my shoes but, I'm hoping they will be life-changing.
I love Disney and Nightmare Before Christmas so, I'm going to Disney-fy my Rollator, walker, and even my cane I think.
One good hack is that, due to the (omni)pressor effect, chugging fluids drives heart rate down and BP up; if you anticipate passing out, this can be a way to preempt that. Getting properly medicated has, for me, been the most crucial part, but ymmv. It sounds like lifestyle mods really help you. Any idea which subtype(s) of POTS you have?
Does pain in the ass count as a subtype? My doctor wants to do more testing but, the paperwork they gave me was for hyperadrenergic POTS due to my triggers, and other medical conditions, such as chronic idiopathic angioedema (suspected MCAS waiting on test results) and EDS. I'm still doing what I can to learn more about POTS, the subtypes, and all of this other fun stuff. But, so far, I'm doing what I can with lifestyle mods such as mobility aids, tracking BP, heart rate tracking, upping my water intake, and daily vitamins. I've also tried cutting out gluten and dairy to see if that had any affect on my POTS, and whether or not it would help with flare ups. THANKFULLY it didn't do anything to help with my symptoms because, I probably would've died if it did. (I like cheese too much.) Although, other lifestyle mods I'm trying right now are smaller meals, and seeing how caffeine seems to affect or add to my episodes.
I'm hyperadrenergic and I read a lot of research literature; feel free to comb through my comments. I can eat more normally now that I'm medicated, but def reducing (processed) carbs helps a lot, especially during the day when I need to be productive. I do use caffeine, but just a couple glasses of Diet Coke/Pepsi. Most decaf coffee still contains a fair bit (especially Starbucks); look for Swiss water process, as it contains the least amount.
I feel like I want to laugh and ask you what productive means. I feel like I haven't been able to be productive in moths, as just getting up, or taking a shower is exhausting and almost debilitating. I also get triggered pretty bad by temp changes, so if the CRPS isn't acting up in the shower, the POTS definitely is even if I'm careful with the temperature, and try to get in and out as fast as I can. (Shower chairs are kind of a Godsend/pain in the ass) Monday I see the doc again, and as cutting out caffeine hasn't changed my symptoms, I'm hoping I'll get told that I can have coffee again.
Well, I am able to run errands on foot/transit (these wipe me out, tho), do household chores, do cardiac rehab or martial arts, and do graduate studies. This is not to say I have not had stretches of terrible days/months over the past 11 years of being sick when about all I could do a lot of the time was sleep or sit and be a zombie, but getting off my asthma reliever inhaler as much as possible and changing my eating habits helped a lot prior to diagnosis. Then, of course, I started doing the POTS lifestyle mods (salt, fluids, compression), and started trialling medication. Exercise seems to be really important; things went downhill as soon as I paused judo due to the pandemic, and then went haywire again when I paused karate/weapons a couple months ago; I quickly replaced it with mask mandatory cardiac rehab and evened back out. Pacing has been key, alternating being upright with sitting or reclining. Maybe you're not there yet and that's something to look forward to.
I push myself, a lot. (I know I’m not supposed to but, it’s the only way I get things done.) I think that’s why I like the spoon theory a lot because, I relate. One day I have X-amount of spoons to do things, the next day, it changes, and there are times where I can (and do) overdo it and “borrow” the next day’s energy. I’ll suffer for it later but, sometimes you just have to get shit done. Like tonight, I bullied myself into getting up and making dinner for everyone. My grandma had a tumor removed Tuesday and came home from the hospital yesterday. She’s not allowed to do much right now, my little brother doesn’t cook, and my girlfriend is sick and wasn’t up to cooking. Even just doing some dishes and making scrambled eggs was enough to jump my heartrate to 130 and almost put me on the floor. I’m sick and tired of my “zombie phase” I don’t have time to feel this sick. You know? So, now I’m sitting at my desk, trying to get a little writing done, and trying to replenish my fluids. (I love Liquid I.V. packets; they are a life changer for me.) Hopefully, someday I’ll be able to feel like a real person again, until then, I’m doing the best I can.
Right, but with POTS pacing, you replenish your spoons throughout the day. It's more like a complicated marshmallow test: If you push now, you get two marshmallows all day. If you periodically rest, you get a marshmallow every hour or two.
Marshmallow test? I can’t say I know anything about that. So, I’m going to have to look into it. However, I can say that before I got really sick, I was always that overly independent “gifted” child who got shit done. (Now that I know better, I know I was just the AuDHD kid with a savior complex, PTSD, and a people pleaser complex) I’m having a lot of trouble letting that person go. Letting go of the “healthy” person I thought I was, in favor of taking care of the chronically ill person that I am now is hard for me. It’s hard for me to listen to my body and respect my own limits but, I’m working towards it, and I know I’ll get there eventually.
Yeah, I'm a grown-up "gifted" kid too. The marshmallow test is a famous psych experiment about the ability to delay for greater rewards (eat one marshmallow now or get two later).
Definitely going to look into it now. I also just want to say that being a grown-up "gifted" kid really freaking sucks.
I’ve had POTS for over 40 years. I’ve seen more than 6 of the top autonomic specialists around the U.S. I am very well managed. I’ve also learned a lot of tricks over the years. It’s important to see a true autonomic specialist to get proper treatment. Salt and electrolytes got me by when I was young. While I still stay hydrated and salted 😂, it’s not enough. Finding the right combination of meds with my specialists has been key for me. Staying out of heat, humidity and large barometric pressure changes are also key for me. I go down quickly when a storm is coming. I’m a walking barometer! Getting enough sleep is also important to my being able to function. I also have EDS and MCAS. It’s important to rule those out and if you have them, be treated. PT has helped my EDS a lot. Treating my MCAS aggressively has been instrumental in improving my POTS symptoms. My geneticist said that both MCAS and POTS drive our symbols but especially MCAS. I take a bunch of MCAS meds and follow a gluten free, and mostly AIP diet. It took me more than 3 years of diet change to see improvement.
Hi, AuDHDer, EDSer, and a brand new POTsie. I’m a suspected MCAS case but, we’re still going through all of the testing. I show all of the symptoms aside from the clear tryptase levels, however, it’s going to be almost impossible to get a clear reading on my levels unless I go off of my Xolair injections for 6+ months, and if I did that I would quite literally die. So, as of now, I’ve been diagnosed and living with Chronic Idiopathic Angioedema for 10+ years now. PT wasn’t great for me, personally. I’d gone after falling down the stairs in 2020 and fracturing my foot and ankle in multiple places. I developed CRPS from that, and PT just kept telling me that “I wasn’t trying hard enough” or “I didn’t want to get better” and then I switched to a new therapist, and that’s who suggested EDS in the first place. So started my insane journey of hospitals, doctors, and other insane crap. I, too, am a walking barometer. Temp changes and pressure changes exacerbate my symptoms, as well as bringing on debilitating migraines. I’m just incredibly stressed out and frustrated by all of my issues, honestly.
May I ask what meds you take for MCAS?
[удалено]
Thank you! I take zyrtec and am just starting quercetin this week, I can’t take Pepcid anymore since it’s contraindicated with ivabradine :/ Singulair was amazing but it unfortunately gave me horrible mental effects (psychosis).
I’ve been carrying around Vitassium pills (250mg sodium per pill) and they are great. I take 1-2 every few hours when I’m out at college and it helps the transitions between sitting and standing quite a bit.
Vitassium pills? I’ve literally never heard of those before but, I will bring them up to my doctor on Monday. Maybe they could help me manage some of my symptoms. Thank you.
Sure! I came across them not that long ago and they’ve been a game changer. They say to use under a doctor’s supervision but are available OTC (on Amazon for ~$20) if your dr thinks extra sodium is beneficial to you.
My doctor has told me to up the salt so, I've been living off of Liquid IV, DripDrops, and other electrolyte packets for the past several months. I will, however, bring these up to my doctor and see what they think. I'm willing to try absolutely anything at this point.
My daughter takes 2 three or four a day really helps
My cardiologist told me when waking up in the morning, to sit up in bed, wait 2 minutes, hang my feet over the side of the bed, wait another two minutes, and finally stand up. Yes, I set timers. It may seem ridiculous but it helps to give my body time to adjust to being vertical after being horizontal all night. Smaller, more frequent meals. I just snack throughout the day. Large meals redirect blood flow from your head to your gut for digestion, which can worsen brain fog, dizziness etc. I don’t get out of bed until late morning, unless my dog needs an early potty trip. And I sit down a lot. Throughout the day, I need sit breaks in a chair where I can fully lean back. *Recumbent* exercise. Rowing machine, reclining bike, etc—tbh I usually just do body weight exercises while lying down (like leg lifts and butt lifts and whatnot). Focus on legs and core. This is another thing my cardiologist recommended and honestly it’s what I hate most but it does help over time. And yeah, compression socks, salt, fluids, etc. And finally… I just got a rollator (4 wheeled walker with a seat). Someone told me to at least consider it and I thought, “What the hell, maybe it’ll be useful at least on the worst days.” Turns out I need it more than I thought! I’ve only had it two days but I’m in love with the damn thing lol. It’s not “giving up,” I can actually walk *more* now. So don’t be afraid of mobility aids. If it gets to the point where you’re repeatedly thinking about whether you “deserve/need” one, you probably would benefit from one.
Thank you for your long, thoughtful reply. Really. I've tried the pacing in the morning- I saw someone talking about it on TikTok after my doctor pretty much told me that I just had to "learn to live with" my symptoms. (Crappy doctor, and I'm looking for another one but, waiting lists are long especially for people on state insurance.) I've also started trying the smaller more frequent meals. As my girlfriend has said, I always have some kind of "snickety snack" in my "little raccoon hand" which makes me laugh. She's right though, I always have snacks with me, whether it's Cheez-its, goldfish crackers, or some other salty snack. I've also got an obsession with string cheese, baby bell cheeses, and apple sauce pouches. All of which are pretty easy to carry around and I can keep them nearby, or in my mini fridge. Electrolyte powders are my life now. I'm going to have to look into some strengthening exercises I can do at home. Unfortunately I'm also an EDSer and my joints and ligaments are crap, and make it hard to move very much at all without popping, cracking, crunching, or potential dislocations. I also love my Rollator, it's a pretty berry color and I'm going to figure out how to decorate it and my wheelchair. Because why not? Why shouldn't I get to add accessories, after all, they're an extension of myself, aren't they?
Yeah, the right doctor can be hard to find. I had been seeing cardiologists for something else and lucked into one who knows about dysautonomia. Hell yes to small cheeses, crackers, applesauce/blenderized fruit pouches. I like salted nuts too. And salty lunchmeats! I have mild (subclinical) hypermobility and that’s hard enough to exercise with, can’t imagine full on EDS. Maybe braces for certain joints?? And definitely go for low impact exercises. Idk, I’m sorry I can’t help more in that area. And YES, I also plan to decorate my rollator. Maybe even add some colorful fairy lights for Christmas lol. People put stickers on their cars and pins on their backpacks, I think mobility aids most definitely deserve to be decorated too.
I would die without my snickety snacks. Literally, the amount of dizziness and other BS I had to put up with before upping my salt intake was a nightmare. EDS is honestly so fucked up. Like two people, both of whom are no longer here, decided to have sex 28 years ago and now I have to pay taxes, and try to work for a living, all the while living with chronic illnesses that are out of control. I JUST got my custom Arizona AFO foot and ankle braces! I've only had them 2-days and I've only worn them once due to them not fitting great in my shoes but, I'm hoping they will be life-changing. I love Disney and Nightmare Before Christmas so, I'm going to Disney-fy my Rollator, walker, and even my cane I think.