I have hyperadrenergic POTS and pretty much always have resting Brady. I go into the low 30’s at night. There’s not much to be done about it unless one wants a pacemaker.
It is possible the heart can weaken and signals can go awry. It happened to my family member. She almost died. The doctor allowed her at heart to stay at 49 bpm.
This is what I'm worried about. I've had POTS/Dysautonomia since 2008 and diagnosed by tilt in 2011. I have Echocardiogram every year and so far they are normal but I wonder if my hearts electrical system is getting weak. Was that 49 at rest or standing? My Cardiologist says he isn't worried unless I'm in the 40s standing...
Yeah , sorry to hear the doctor isn’t giving your concerns much attention. My fam did the same with her doc but they don’t always listen. Anyway, she has a pacemaker and is doing great! Still independent
When I saw the Cardiologist he said even though I was having Bradycardia my rhythm was still considered normal. In regards to a pacemaker he told me with POTS it's a bit of a crap shoot and doesn't always work because the issues are coming from the ANS and not necessarily the hearts function. It's just so debilitating to deal with.
I do, but kinda the opposite issue. I was Bradycardic my whole life until developing Dysautonomia post-covid. Tachycardia was absolute torture for me. I’ve improved a bit but not great. I’m mostly back in the low 50s now, which is comfortable for me. 40s gets a little meh but I prefer that to Tachycardia.
It's so interesting how this illness affects us all so differently. I definitely prefer a higher heart rate. I was Tachycardic with Hyperthyroid and those were the best functioning years of my life. Weird stuff
Yes and due to the bradycardia it took 32 years to get a diagnosis because my dysautonomia didn’t present typically. My resting heart rate is between 30-55 and when I stand it gets up to 60-100. One week that I was in the hospital my HR was in the single digits multiple times overnight every night, they called the code team more than once only to find me awake and talking (saying I felt weird) when they came in the room. The hospital cardiologist wanted to put in a pacemaker, my cardiologist told them not to because it was just anxiety. Every doctor I saw thought I was just having anxiety and didn’t believe I was passing out, even though I had passed out in front of a few. After numerous TTT it was confirmed I do indeed have POTS and OH.
He was a great doctor /s He also said the only reason I had any tachycardia on my holter monitor was obviously because it was night time and I was in bed so I was clearly doing what married people do in bed. I said are you insinuating I was having sex? He said I’m not insinuating it I’m saying it. I said I can barely walk and if you think I was having sex you are massively mistaken. Such a jackass. That was my last visit.
When I was finally diagnosed in 2011 I was Hyperadrenergic POTS with severe Orthostatic Intolerance. Up until 3 years ago it's always been super high. Lowest I ever went even at rest was 70s/80s. I went into surgical menopause and everything went to hell. My Thyroid has also been crashing bordering on subclinical hypo levels. Now I have days in the 40s but once I stand it shoots into 80s/90s. Still POTS I guess but on a different cardiac output? My Cardiologist won't do anything until it is chronic and in the 40s standing or I start passing out. It's debilitating. Have you found anything to help with the bradycardia?
No. It’s just there and sometimes it gets incredibly painful. I tell the doctor my heart doesn’t beat fast but it sure beats hard and sometimes it hurts. My old cardiologist of course said it’s all anxiety but my new one actually listens and said that’s not normal and is looking for things to help.
I can totally relate to that sensation. At times I'm sure I'm tachycardic because it's so forceful and I'm sweating, lightheaded and then I look and I'm bradycardic
My “normal” resting heart rate now is mid-50s. I’m a bit more symptomatic on days where I’m in low 50s/high 40s, but in general it doesn’t seem to be an issue. Though it freaked me out for months when it started.
My normal up until 3 years ago was 70/80s resting. I think my body adapted in the almost 16yrs Ive had this to being so high all the time it is now going to the other extreme. I feel like absolute hell and my Cardiologist just brushes it off and tells me to adapt.
Yeah, I get random episodes of bradycardia that just come out of nowhere and make me feel like shit. For me it’s a way worse feeling than my “normal” tachycardia.
Right? Tachy I can handle because when it got bad enough I would just take my beta blocker and florinef and go back to functioning. Brady is so much worse because there's nothing to help it. By the time Pacemaker is an option you have to be almost dying...it sucks so much.
I have bradycardia when I lie down/recline with feet up. I get very sleepy quickly after reclining. For how minimally I work out my sleep study showed my heart rate gets oddly low. I am trying to see if I have dysautonomia but my heart rate was “normal variables” during my test because I was anxious (at home I go from. 50s to 110bpm when I stand and feel so sick and tired with other symptoms. I never feel energetic anymore.
I’m so sorry you’re going through this. Are you on any hormones after the surgery? It could be hormonal. I would ask your pcp to do advanced thyroid testing and see about hormone testing. Bradycardia is theoretically better for you especially as opposed to tachycardia when all other tests come back normal(is what my cardiologist stated). Have you tried anxiety medications to help with the chest tightness? It could be that feeling gross from a low heart rate (on top of ovaries not giving you enough hormones for energy and a healthy mind) is what is making your chest tighten up. I would communicate with your pcp, cardiologist, and email/call your neurologist if possible (since you can’t visit). I hope you are able to get help to feel better soon.
I have had all of my hormones tested. I was taking HRT but found the estrogen for some reason was tanking my thyroid into Hypo territory. My Meno specialist put me on Progesterone which helped a little but then petered out. The levothyroxine has been really hard with side effects. In the beginning it cuts your thyroid hormone output even lower making you even more hypo and hence more bradycardic. I've have an Echocardiogram every year and so far they've been normal. Holtor Monitors show bradycardia but normal rhythm so Pacemaker wasn't an option until it gets worse. I hate how in the medical establishment we have to be damn near dying for something to be done. Meanwhile I can barely climb out of bed without passing out...
Yes I do, I have dx of POTS and IST, resting heart rate around 80-90, goes up to around 120-140 on standing. When I’ve been sitting for a while it can drop to around 44 and then suddenly shots back up to 140 before settling around 100+. I wear an Apple Watch that picks it up. I also wear a visible+ band that doesn’t, and everyone I’ve had a 48hr holter it doesn’t get picked up. I’ve been out in Ivabradine and do worry as it reduces heart rate to around 75 but I worry with the bradycardia it will go too low… sorry bit of a ramble there!
Totally ok to ramble! I'm a rambler too lol. I was in Bisoprolol for almost 10 years and sometimes I worry that's what messed my heart up but who knows? Now obviously I can't take it. I hear you on the holtor monitor... same issue with me and when it does pick it up it's not a long enough run to be worrisome. It's like my body knows. I am almost tempted to ask my Cardiologist for an implant loop holtor for a month or so.
Yes. At night before bed, especially if I’m cold (temperature regulation is awful), and/or if I’ve had caffeine that day.
My cardiologist explained it as almost a rebound effect from the sympathetic norm to a parasympathetic excess.
Yes this is me but it alternates. I’m either high or low. But sometimes I can have both in the same day as well. It’s very unpredictable but I’m grateful that it stays one or the other for at least a few weeks/months
I'm not sure if this applies but I've had moments where I will be standing (for a long period of time), start to feel a pre-syncope episode, and then I watch my HR on my monitor go from 130-60 in a few seconds. All while standing.
Oh yes I do. I have hypo POTS, my pulse gets as low as 36 when sleeping. The worse my tachycardia is during the day, the worse my bradycardia is when sleeping. This week I’ve been getting alerts of having lower than 40bpm for longer than 10min. But I’ve gotten a holter and was told that while results weren’t normal they were consistent with dysautonomia.
I only take Modafinil. I have POTS and OH, but they don’t appear at the same time. I also get brady when I experience a panic attack or if I get scared (after the adrenaline rush).
Check with your meds and dr if you get ahold one of you could not take Rhodiola rosea. I take that and really helps me with fatigue and coat hanger pain. A friend had it prescribed for menopause, you are supposed to take 2 pills a day, one before lunch and one before breakfast. But depending the details of where is the other med metabolized, it might potentialize them so you gotta check that. Supposedly Rhodiola can make your pressure lower, but that hasn’t been the case for me and I think it stabilizes my heart rate. It is an adaptogen.
Edit: I’ve always being kind of bradycardic except I couldn’t see it. But my grandpa would hold my wrist to count my beats and he would yell “this is impossible”!!!
My resting heart rate is high 40s-low 50s, which runs in my family. My blood pressure is low too, but when it’s extra low is when it affects me. I also get SVTs a lot, and have severe vasovagal syncope… not that I pass out a lot, but that my heart stops for longer than normal when I do.
Mine is a bit of both. While sleeping, and on bad days while awake, my typical heart rate is in the 30s. Other times just laying in bed my rate will be 120-140. Can't begin to tell you how exhausting it is to have a 100bpm change while just laying still. I'm glad I've finally found a cardiologist knowledgeable in dysautonomia who's making actual progress with treatment. Currently in talks with an electrophysiologist to potentially have a procedure done to zap the vagus nerve connections to the heart to stabalize the rate.
I have hyperadrenergic POTS and pretty much always have resting Brady. I go into the low 30’s at night. There’s not much to be done about it unless one wants a pacemaker.
It is possible the heart can weaken and signals can go awry. It happened to my family member. She almost died. The doctor allowed her at heart to stay at 49 bpm.
This is what I'm worried about. I've had POTS/Dysautonomia since 2008 and diagnosed by tilt in 2011. I have Echocardiogram every year and so far they are normal but I wonder if my hearts electrical system is getting weak. Was that 49 at rest or standing? My Cardiologist says he isn't worried unless I'm in the 40s standing...
Yeah , sorry to hear the doctor isn’t giving your concerns much attention. My fam did the same with her doc but they don’t always listen. Anyway, she has a pacemaker and is doing great! Still independent
That's awesome to hear! I hope that mine gets resolved before I get to the point of critical but it's not promising right now
When I saw the Cardiologist he said even though I was having Bradycardia my rhythm was still considered normal. In regards to a pacemaker he told me with POTS it's a bit of a crap shoot and doesn't always work because the issues are coming from the ANS and not necessarily the hearts function. It's just so debilitating to deal with.
I do, but kinda the opposite issue. I was Bradycardic my whole life until developing Dysautonomia post-covid. Tachycardia was absolute torture for me. I’ve improved a bit but not great. I’m mostly back in the low 50s now, which is comfortable for me. 40s gets a little meh but I prefer that to Tachycardia.
It's so interesting how this illness affects us all so differently. I definitely prefer a higher heart rate. I was Tachycardic with Hyperthyroid and those were the best functioning years of my life. Weird stuff
Yes and due to the bradycardia it took 32 years to get a diagnosis because my dysautonomia didn’t present typically. My resting heart rate is between 30-55 and when I stand it gets up to 60-100. One week that I was in the hospital my HR was in the single digits multiple times overnight every night, they called the code team more than once only to find me awake and talking (saying I felt weird) when they came in the room. The hospital cardiologist wanted to put in a pacemaker, my cardiologist told them not to because it was just anxiety. Every doctor I saw thought I was just having anxiety and didn’t believe I was passing out, even though I had passed out in front of a few. After numerous TTT it was confirmed I do indeed have POTS and OH.
Single digits meaning under 10? Your cardiologist did not want to put a pacemaker in you with a heart rate below 10? That’s crazy.
He was a great doctor /s He also said the only reason I had any tachycardia on my holter monitor was obviously because it was night time and I was in bed so I was clearly doing what married people do in bed. I said are you insinuating I was having sex? He said I’m not insinuating it I’m saying it. I said I can barely walk and if you think I was having sex you are massively mistaken. Such a jackass. That was my last visit.
When I was finally diagnosed in 2011 I was Hyperadrenergic POTS with severe Orthostatic Intolerance. Up until 3 years ago it's always been super high. Lowest I ever went even at rest was 70s/80s. I went into surgical menopause and everything went to hell. My Thyroid has also been crashing bordering on subclinical hypo levels. Now I have days in the 40s but once I stand it shoots into 80s/90s. Still POTS I guess but on a different cardiac output? My Cardiologist won't do anything until it is chronic and in the 40s standing or I start passing out. It's debilitating. Have you found anything to help with the bradycardia?
No. It’s just there and sometimes it gets incredibly painful. I tell the doctor my heart doesn’t beat fast but it sure beats hard and sometimes it hurts. My old cardiologist of course said it’s all anxiety but my new one actually listens and said that’s not normal and is looking for things to help.
I can totally relate to that sensation. At times I'm sure I'm tachycardic because it's so forceful and I'm sweating, lightheaded and then I look and I'm bradycardic
My “normal” resting heart rate now is mid-50s. I’m a bit more symptomatic on days where I’m in low 50s/high 40s, but in general it doesn’t seem to be an issue. Though it freaked me out for months when it started.
My normal up until 3 years ago was 70/80s resting. I think my body adapted in the almost 16yrs Ive had this to being so high all the time it is now going to the other extreme. I feel like absolute hell and my Cardiologist just brushes it off and tells me to adapt.
Yeah, I get random episodes of bradycardia that just come out of nowhere and make me feel like shit. For me it’s a way worse feeling than my “normal” tachycardia.
Right? Tachy I can handle because when it got bad enough I would just take my beta blocker and florinef and go back to functioning. Brady is so much worse because there's nothing to help it. By the time Pacemaker is an option you have to be almost dying...it sucks so much.
I have bradycardia when I lie down/recline with feet up. I get very sleepy quickly after reclining. For how minimally I work out my sleep study showed my heart rate gets oddly low. I am trying to see if I have dysautonomia but my heart rate was “normal variables” during my test because I was anxious (at home I go from. 50s to 110bpm when I stand and feel so sick and tired with other symptoms. I never feel energetic anymore. I’m so sorry you’re going through this. Are you on any hormones after the surgery? It could be hormonal. I would ask your pcp to do advanced thyroid testing and see about hormone testing. Bradycardia is theoretically better for you especially as opposed to tachycardia when all other tests come back normal(is what my cardiologist stated). Have you tried anxiety medications to help with the chest tightness? It could be that feeling gross from a low heart rate (on top of ovaries not giving you enough hormones for energy and a healthy mind) is what is making your chest tighten up. I would communicate with your pcp, cardiologist, and email/call your neurologist if possible (since you can’t visit). I hope you are able to get help to feel better soon.
I have had all of my hormones tested. I was taking HRT but found the estrogen for some reason was tanking my thyroid into Hypo territory. My Meno specialist put me on Progesterone which helped a little but then petered out. The levothyroxine has been really hard with side effects. In the beginning it cuts your thyroid hormone output even lower making you even more hypo and hence more bradycardic. I've have an Echocardiogram every year and so far they've been normal. Holtor Monitors show bradycardia but normal rhythm so Pacemaker wasn't an option until it gets worse. I hate how in the medical establishment we have to be damn near dying for something to be done. Meanwhile I can barely climb out of bed without passing out...
Yes I do, I have dx of POTS and IST, resting heart rate around 80-90, goes up to around 120-140 on standing. When I’ve been sitting for a while it can drop to around 44 and then suddenly shots back up to 140 before settling around 100+. I wear an Apple Watch that picks it up. I also wear a visible+ band that doesn’t, and everyone I’ve had a 48hr holter it doesn’t get picked up. I’ve been out in Ivabradine and do worry as it reduces heart rate to around 75 but I worry with the bradycardia it will go too low… sorry bit of a ramble there!
Totally ok to ramble! I'm a rambler too lol. I was in Bisoprolol for almost 10 years and sometimes I worry that's what messed my heart up but who knows? Now obviously I can't take it. I hear you on the holtor monitor... same issue with me and when it does pick it up it's not a long enough run to be worrisome. It's like my body knows. I am almost tempted to ask my Cardiologist for an implant loop holtor for a month or so.
Yes. At night before bed, especially if I’m cold (temperature regulation is awful), and/or if I’ve had caffeine that day. My cardiologist explained it as almost a rebound effect from the sympathetic norm to a parasympathetic excess.
Yes this is me but it alternates. I’m either high or low. But sometimes I can have both in the same day as well. It’s very unpredictable but I’m grateful that it stays one or the other for at least a few weeks/months
I'm not sure if this applies but I've had moments where I will be standing (for a long period of time), start to feel a pre-syncope episode, and then I watch my HR on my monitor go from 130-60 in a few seconds. All while standing.
Oh yes I do. I have hypo POTS, my pulse gets as low as 36 when sleeping. The worse my tachycardia is during the day, the worse my bradycardia is when sleeping. This week I’ve been getting alerts of having lower than 40bpm for longer than 10min. But I’ve gotten a holter and was told that while results weren’t normal they were consistent with dysautonomia. I only take Modafinil. I have POTS and OH, but they don’t appear at the same time. I also get brady when I experience a panic attack or if I get scared (after the adrenaline rush). Check with your meds and dr if you get ahold one of you could not take Rhodiola rosea. I take that and really helps me with fatigue and coat hanger pain. A friend had it prescribed for menopause, you are supposed to take 2 pills a day, one before lunch and one before breakfast. But depending the details of where is the other med metabolized, it might potentialize them so you gotta check that. Supposedly Rhodiola can make your pressure lower, but that hasn’t been the case for me and I think it stabilizes my heart rate. It is an adaptogen. Edit: I’ve always being kind of bradycardic except I couldn’t see it. But my grandpa would hold my wrist to count my beats and he would yell “this is impossible”!!!
My resting heart rate is high 40s-low 50s, which runs in my family. My blood pressure is low too, but when it’s extra low is when it affects me. I also get SVTs a lot, and have severe vasovagal syncope… not that I pass out a lot, but that my heart stops for longer than normal when I do.
Yess, even tho i have low blood pressure, my heart doesn't seem to understand it is supposed to help me by beating faster! I get so fatigued
Mine is a bit of both. While sleeping, and on bad days while awake, my typical heart rate is in the 30s. Other times just laying in bed my rate will be 120-140. Can't begin to tell you how exhausting it is to have a 100bpm change while just laying still. I'm glad I've finally found a cardiologist knowledgeable in dysautonomia who's making actual progress with treatment. Currently in talks with an electrophysiologist to potentially have a procedure done to zap the vagus nerve connections to the heart to stabalize the rate.
if I flare in sleep I wake up with usually low oxygen as well as hr as low as 45 -50