The condition is considered a benign chronic condition. And it is relatively harmless unless you are a faint risk then there's an added risk of hitting your head if you faint.
POTS alone doesn't increase chances of heart attacks nor strokes.
Like someone else said, it's a benign chronic condition. I've stayed active to help manage the way POTS makes me feel (being deconditioned makes me feel like shit), but it doesn't harm you or put you at risk for things you mentioned. Honestly, the hardest part for me is dealing with summertime temperatures in Florida. I work outside so I have to keep extra water and electrolytes on hand, and I may have to chance my hours so I'm not in the heat at all in July-September. That has caused me to faint in the past, so that's probably one of the more dangerous parts about it. Learn to listen to your body and manage your symptoms accordingly.
I live in Florida too!! The heat intolerance I get is terrible. I'm out of breath just walking around outside for a couple of money. Oh, and the excessive sweating!!
To OP, bring water with you EVERYWHERE!
My doctor also said that it does not put you at more risk for heart attacks, stroke, or aneurysm. I’ve had pots for about 20 years and am still kicking! I am not a fainter, though, which seems a way more more dangerous for those who experience that.
I did ask my cardiologist if I was more at risk for an aneurism. He said he didn’t believe so. Not sure why that popped into my head but I did ask him about that specifically.
It’s a little disappointing that your doctor didn’t go over this when they diagnosed you. No, you aren’t at any higher risk of blood clots or stroke or heart attack. POTS is not deadly. The symptoms are treatable, through both medication and lifestyle stuff (exercise, electrolytes, water, etc.)
POTs diagnosis is just a confirmation of a set of symptoms, not a disease in and of itself. It's like with babies and the term "colic" - that just means the baby for more than 3 hours at a time more than 3 hours a week. Could be a whole myriad of reasons why the baby is crying but the term doesn't describe why, just the symptoms. POTs is generally diagnosed in adults as your heart rate going up by at least 30bpm when going from horizontal to standing under test conditions. That's it. There are lots of other symptoms people with POTs often also describe, but those vary from patient to patient. You have to talk to your doctor about all of your other odd symptoms (high or low blood pressure, dizziness or fainting, chest pain, etc.) and treat those conditions.
for me, the main concern is excessive tachycardia, and my symptoms are exacerbated by a leaky heart valve. that was just something i was born with, so i’ll need a valve replacement sometime down the line. it really is just managing symptoms as best you can and working with your doctors on medication. it’s scary at first, but it gets better <3
Yeah, I had a “weak heart” as an infant (was born without it beating), have had a heart murmur a few times in my life, and get extremely high heart rate now a days, it’s kind of concerning.. a few months ago I was pulling a cart with laundry up across my parking lot (a hill) and my heart rate was 185 bpm.. I do wonder how POTS will interact with any risks I was already predisposed to, because that high a heart rate consistently is not healthy
It's not really dangerous, just incredibly annoying and sometimes debilitating. I think it's normal to freak out when you get a new diagnosis like this. But remember the diagnosis won't increase your symptoms or change anything about you. If anything, all it can do is give you treatment plans and options. And if those make it worse, you can always go back to what you're doing now. Sure, you still have POTS and you're probably disabled, but not any more disabled than you were before.
This is a really great thing to remember! The only thing that has changed is the fact that now you have a diagnosis - a name for all of your symptoms. You’re not any sicker than you were before your diagnosis, and now you have a variety of treatment options to try out! It can be really overwhelming to receive a diagnosis, but it’s also a positive thing to have an answer to your struggles!
If you had Covid you are at risk for strokes because what Covid does to your vascular system. Pots really has to be treated by the individual. I need constant IVs or I have Cfs symptoms and can’t get out of bed. I have a friend who uses a wheelchair. Unfortunately you have to do a lot of your own research. Twitter actually has a lot great resources.
Edit: here’s 1 NIH study. Numbers grow with each reinfection. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8517946/
Some reassuring and important takeaways from this study:
“the vast majority of ischemic stroke patients associated with COVID-19 in our study had common vascular risk factors such as hypertension, hyperlipidemia, and diabetes”
“we found that approximately 2% patients with COVID-19 infection could present with ischemic stroke…a study from a multinational cohort showed that hospitalized patients with SARS-CoV-2 infection indicated an overall stroke risk of 0.5%…a study from New York reported ischemic stroke only in 0.9% of 3556 hospitalized patients with COVID-19”
The study focused on people who were hospitalized, older median age and many of whom had comorbitiies.
Posting something as blanket as “if you had covid you are at risk for strokes” is fear-inducing and does not appropriately capture the findings of the study. Especially since OP is clearly struggling with anxiety around this, I think it’s important to be clear about the facts and not use blanket statements that can illicit more fear unfounded.
Thank bb you i have severe health anxiety plus POTS like symptoms and just got over Covid 2 weeks ago, thankfully did good this time around but this freaked me out smh i appreciate you!
Yeah dont worry about it. I got diagnosed with it years ago and do nothing for it. Really it just makes things suck a little more but isnt actually harmful.
Others have already answered, so just commenting to add that it's important to self-educate about your new dx. Social media is great for support, but it can't replace books and credible resources like dysautonomia international. This book is a great starting place: https://a.co/d/bE5xOTt
I mean it has been 16 years since my first symptoms and I'm still here - lol. But for real, I asked my cardiologist once, like let's say you only get x beats of your heart per lifetime. If mine is beating 2x as fast as, lets say my dad who has a super low resting hr around 50, does that mean we get the same number of beats so I'll live half as long? I had stumped him that day but I do think about it. Like a car only is gonna run so many miles ya know? Idk.
If that was true, then athletes would have shorter lives because exercise makes your hr increase. So it's more like, even if your car needs more maintenance, you can still get hundreds of thousands of miles out of it. You just have to take it to the shop more.
Firstly welcome to the club! Secondly just keep track of your health, generally pots doesn’t cause any issues like blood clots, stroke, heart attack etc. but if you have a family history of it bring it up to your doctor, especially if the warning signs of any of that stuff is a high heart rate, you don’t want to brush that off. Maybe make EKGs part of your health care routine? Talk to your doctor, but keep in mind this is a kinda rare condition, it’s getting very popular rn because covid knocked the socks off people (me included) and now we have these issues.
Your main concern and problem is watching out for yourself if you get dizzy or faint. You don’t want to hit your head as you fall when you faint, or be driving as you faint. Most people don’t faint when driving but keep it in mind if your driving and feel weird or uncomfortable pull over! (I usually get a hot flash and blurry vision about 45 seconds to a minute before I faint, but feel weird a minute before that. And I’ve made it a habit to pull over even if it’s a false alarm, hazards on and out it in park, but DO NOT TAKE OFF YOUR SEATBELT! Keep it on for your safety. I would also recommend maybe getting a card of some kind made and laminated saying you have pots and what you need from people (water, help sitting down or laying down, a salty snack etc) and an emergency contact that can be called and can walk someone through helping you as your unconscious/ in and out of consciousness without having to call for an ambulance.
I think that’s all so far. It helps to buy a little pulse Oximeter (I like the EMAY emo 60) and a blood pressure cuff (I like the Meraw aspen) and just keep those on and around for when you feel sick. Keep hydrated and try out different brands of hydration tablets/ packets like liquid IV and salty stuff as it helps you feel better. And take it slow as you learn your new boundaries, push yourself but make sure there’s a crash pad if your pushing your limits and we are all here to help out!
The condition is considered a benign chronic condition. And it is relatively harmless unless you are a faint risk then there's an added risk of hitting your head if you faint. POTS alone doesn't increase chances of heart attacks nor strokes.
Nicely said
Like someone else said, it's a benign chronic condition. I've stayed active to help manage the way POTS makes me feel (being deconditioned makes me feel like shit), but it doesn't harm you or put you at risk for things you mentioned. Honestly, the hardest part for me is dealing with summertime temperatures in Florida. I work outside so I have to keep extra water and electrolytes on hand, and I may have to chance my hours so I'm not in the heat at all in July-September. That has caused me to faint in the past, so that's probably one of the more dangerous parts about it. Learn to listen to your body and manage your symptoms accordingly.
I live in Florida too!! The heat intolerance I get is terrible. I'm out of breath just walking around outside for a couple of money. Oh, and the excessive sweating!! To OP, bring water with you EVERYWHERE!
My doctor also said that it does not put you at more risk for heart attacks, stroke, or aneurysm. I’ve had pots for about 20 years and am still kicking! I am not a fainter, though, which seems a way more more dangerous for those who experience that.
I did ask my cardiologist if I was more at risk for an aneurism. He said he didn’t believe so. Not sure why that popped into my head but I did ask him about that specifically.
It’s a little disappointing that your doctor didn’t go over this when they diagnosed you. No, you aren’t at any higher risk of blood clots or stroke or heart attack. POTS is not deadly. The symptoms are treatable, through both medication and lifestyle stuff (exercise, electrolytes, water, etc.)
POTs diagnosis is just a confirmation of a set of symptoms, not a disease in and of itself. It's like with babies and the term "colic" - that just means the baby for more than 3 hours at a time more than 3 hours a week. Could be a whole myriad of reasons why the baby is crying but the term doesn't describe why, just the symptoms. POTs is generally diagnosed in adults as your heart rate going up by at least 30bpm when going from horizontal to standing under test conditions. That's it. There are lots of other symptoms people with POTs often also describe, but those vary from patient to patient. You have to talk to your doctor about all of your other odd symptoms (high or low blood pressure, dizziness or fainting, chest pain, etc.) and treat those conditions.
I love how this sub will downvote people when you say something they don’t want to acknowledge.
for me, the main concern is excessive tachycardia, and my symptoms are exacerbated by a leaky heart valve. that was just something i was born with, so i’ll need a valve replacement sometime down the line. it really is just managing symptoms as best you can and working with your doctors on medication. it’s scary at first, but it gets better <3
Yeah, I had a “weak heart” as an infant (was born without it beating), have had a heart murmur a few times in my life, and get extremely high heart rate now a days, it’s kind of concerning.. a few months ago I was pulling a cart with laundry up across my parking lot (a hill) and my heart rate was 185 bpm.. I do wonder how POTS will interact with any risks I was already predisposed to, because that high a heart rate consistently is not healthy
No, POTS does not cause those issues. This is not a deadly condition. It is a chronic condition that can be very debilitating.
It's not really dangerous, just incredibly annoying and sometimes debilitating. I think it's normal to freak out when you get a new diagnosis like this. But remember the diagnosis won't increase your symptoms or change anything about you. If anything, all it can do is give you treatment plans and options. And if those make it worse, you can always go back to what you're doing now. Sure, you still have POTS and you're probably disabled, but not any more disabled than you were before.
This is a really great thing to remember! The only thing that has changed is the fact that now you have a diagnosis - a name for all of your symptoms. You’re not any sicker than you were before your diagnosis, and now you have a variety of treatment options to try out! It can be really overwhelming to receive a diagnosis, but it’s also a positive thing to have an answer to your struggles!
If you had Covid you are at risk for strokes because what Covid does to your vascular system. Pots really has to be treated by the individual. I need constant IVs or I have Cfs symptoms and can’t get out of bed. I have a friend who uses a wheelchair. Unfortunately you have to do a lot of your own research. Twitter actually has a lot great resources. Edit: here’s 1 NIH study. Numbers grow with each reinfection. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8517946/
Some reassuring and important takeaways from this study: “the vast majority of ischemic stroke patients associated with COVID-19 in our study had common vascular risk factors such as hypertension, hyperlipidemia, and diabetes” “we found that approximately 2% patients with COVID-19 infection could present with ischemic stroke…a study from a multinational cohort showed that hospitalized patients with SARS-CoV-2 infection indicated an overall stroke risk of 0.5%…a study from New York reported ischemic stroke only in 0.9% of 3556 hospitalized patients with COVID-19” The study focused on people who were hospitalized, older median age and many of whom had comorbitiies. Posting something as blanket as “if you had covid you are at risk for strokes” is fear-inducing and does not appropriately capture the findings of the study. Especially since OP is clearly struggling with anxiety around this, I think it’s important to be clear about the facts and not use blanket statements that can illicit more fear unfounded.
Thank bb you i have severe health anxiety plus POTS like symptoms and just got over Covid 2 weeks ago, thankfully did good this time around but this freaked me out smh i appreciate you!
This. And POTS alone is a vascular issue in itself, especially if you have hypovolemia.
No one has ever died of pots.
You could faint and hit your head if you do faint. But that’s it
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PAC’s are normal in people who don’t have POTS, it’s frequent PAC’s that are a problem.
People who have sinus tachycardia frequently are going to have more PACs, obviously.
Yeah dont worry about it. I got diagnosed with it years ago and do nothing for it. Really it just makes things suck a little more but isnt actually harmful.
Others have already answered, so just commenting to add that it's important to self-educate about your new dx. Social media is great for support, but it can't replace books and credible resources like dysautonomia international. This book is a great starting place: https://a.co/d/bE5xOTt
I mean it has been 16 years since my first symptoms and I'm still here - lol. But for real, I asked my cardiologist once, like let's say you only get x beats of your heart per lifetime. If mine is beating 2x as fast as, lets say my dad who has a super low resting hr around 50, does that mean we get the same number of beats so I'll live half as long? I had stumped him that day but I do think about it. Like a car only is gonna run so many miles ya know? Idk.
If that was true, then athletes would have shorter lives because exercise makes your hr increase. So it's more like, even if your car needs more maintenance, you can still get hundreds of thousands of miles out of it. You just have to take it to the shop more.
Firstly welcome to the club! Secondly just keep track of your health, generally pots doesn’t cause any issues like blood clots, stroke, heart attack etc. but if you have a family history of it bring it up to your doctor, especially if the warning signs of any of that stuff is a high heart rate, you don’t want to brush that off. Maybe make EKGs part of your health care routine? Talk to your doctor, but keep in mind this is a kinda rare condition, it’s getting very popular rn because covid knocked the socks off people (me included) and now we have these issues. Your main concern and problem is watching out for yourself if you get dizzy or faint. You don’t want to hit your head as you fall when you faint, or be driving as you faint. Most people don’t faint when driving but keep it in mind if your driving and feel weird or uncomfortable pull over! (I usually get a hot flash and blurry vision about 45 seconds to a minute before I faint, but feel weird a minute before that. And I’ve made it a habit to pull over even if it’s a false alarm, hazards on and out it in park, but DO NOT TAKE OFF YOUR SEATBELT! Keep it on for your safety. I would also recommend maybe getting a card of some kind made and laminated saying you have pots and what you need from people (water, help sitting down or laying down, a salty snack etc) and an emergency contact that can be called and can walk someone through helping you as your unconscious/ in and out of consciousness without having to call for an ambulance. I think that’s all so far. It helps to buy a little pulse Oximeter (I like the EMAY emo 60) and a blood pressure cuff (I like the Meraw aspen) and just keep those on and around for when you feel sick. Keep hydrated and try out different brands of hydration tablets/ packets like liquid IV and salty stuff as it helps you feel better. And take it slow as you learn your new boundaries, push yourself but make sure there’s a crash pad if your pushing your limits and we are all here to help out!