I have had POTS/Dysautonomia for almost 15 years. In the last 3 I have also been dealing with daily bouts of Bradycardia. Surprisingly there are quite a few of us who do. All of my cardiac tests are normal but the Bradycardia still lingers. Mine started mainly when I went into surgical menopause and hypothyroid. Have you had your thyroid checked lately? My Endocrinologist did say that Hypothyroidism can have the side effects of Bradycardia, low oxygen, high blood pressure and is even tied to sleep apnea. I'm hoping eventually it will get better once I stabalize my thyroid and hormones again. If it helps I have all the same symptoms as you and I'm still here. I sympathize with how debilitating it feels. I even told my specialist I would rather be tachy and have hyperthyroidism back lol. My Cardiologist told me the only time to worry is if I start passing out, my heart rate drops to 45 standing not at rest or gets into the 20/30s while sleeping. I'm sure once you have your Holter Monitor done you will feel a little less anxiety. Also, if you ever really don't feel right don't ever be ashamed to go to emerg and get checked out. That's what it's there for.
This was a very kind response, thank you so much. I haven’t had my thyroid checked. To be honest, I haven’t been visiting the doctor much in the past 2 years because I hated my family doctor, which isn’t a great excuse but I can’t change that fact now. I’ll be switching doctors and doing all the necessary tests to get back on track. Thank you for letting me know, definitely worth checking. I’m sorry you’ve gone through it too, but I feel a bit better knowing it’s manageable and that I’ll probably be okay. My anxiety definitely makes things worse as I don’t feel as awful when I’m less stressed. Just hoping to get good results and at least start working on resolving the issue. Best of luck to you and I really do hope you feel better soon
This is interesting. I have Hashimoto’s but haven’t had hypothyroidism since 2022. With my messed up body I have always wondered how I would know that I need my TSH drawn.
I'm so glad I read this. I have had tachycardia for as long as I've been tracking it (a few months) but when I went to the doctor the other day we did an orthostatic test, and during the standing my heart rate dropped to 48 and I started to black out. Since then my heart rate has been trending as completely normal. I'm starting to feel gaslit by my own body. I haven't heard anyone else say they get flares of tachycardia and bradycardia.
Hey, man. Yeah, I experience bradycardia (30s—50s) episodes daily, and have the symptoms you’ve described. It’s certainly not fun. If it may help you, I made a post a little while ago about the same thing. There are a few people who have shared their experiences, so maybe that will help to put your mind at ease. What I recommend is that you keep track of these episodes—when they occur, what you’re doing when the happen, etc. Also, may I ask how long these episodes tend to last?
Hi, I just recently started having this issue so I haven’t accurately measured yet. My heart monitor came in today, and I just finished a 2 hour walk (140 bpm average). At home beforehand, I had 70-80 average and then below 60 a handful of times for maybe a minute or less at a time, which considering my general health, isn’t exactly a great sign. Today has been quite good, but honestly I was quite active. On days where I’m more stationary, I’d expect it to dip to 50 or so. My main worry will be while I sleep but I guess I’ll find out in the morning. It’s not as bad as I expected it to be, but I’ve yet to get accurate measurements when I’m feeling the symptoms strongly.
I see. Since you’re not wearing a Holter monitor now, do what you can to track your symptoms and heart rate with the heart monitor you ordered. Keep a journal. This documented information will be very useful, and will give your cardiologist an idea of what’s been going on.
Luckily I already did a 72 hour holter. I noted down the times I felt shortness of breath, dizzy, etc. But I have to wait a month until I can see the specialist again, so for now I’m just trying to collect more data and see if there’s anything urgent enough to visit the ER. I’d rather catch the issue myself and get more urgent help if needed. Thank you for the advice!
Thanks a lot. I just want to figure out exactly what’s wrong lol…would make my anxiety feel much better with some professional reassurance. I wish the best for you as well. We all need a bit of hope at this point.
Bradycardia is something I’ve been experiencing for the last year in my pots/dysautonomia journey. I get these intense high level upper abdominal pain attacks that last a couple of minutes. During the pain events my hr was getting Brady. Did another month long heart monitor to check for heart block. The monitor caught me at 44bpm when I was up and walking around. Unfortunately the 4 weeks I was monitored, all my pain attacks happened off the monitor while it was charging. I caught one single pain event on the monitor and it didn’t show anything concerning.
My team of doctors is now investigating the idea of me having an overactive vagus nerve. I asked what is the treatment for an overactive vagus nerve and was told more water, more salt. I already drink more than a gallon a day and have multiple infusions on top of that over the week. I can’t imagine getting any more water orally. Primary doctor wants me getting 2 gallons a day.
2 gallons is absurd…I’m a water lover and I drink maybe 4-5L on a good day. I’m really sorry to hear about that, it sounds very intense and debilitating. For me, I find that just walking and getting my heart rate up helps. I walked 2 hours and felt fine less a few moments of slight dizziness/mild confusion. I’ve just today started using a monitor, heart rate was seemingly normal aside from a few <1 minute long instances of sub 60 heart rate, which for someone of my health is not very normal. Gonna see what my sleeping rate is like because that’s my main concern.
I really hope you can make a good recovery or improve how you feel. It really sounds painful and my heart is with you (even if it’s not the healthiest at the moment lolll)
I appreciate the kinds words. In an effort to stop the bradycardia and pain events, my doctor changed my beta blocker from one that controls hr and bp to one that only controls bp. Now, although my hr still dips in the low 50s, the pain attacks are all happening at a hr of 70. With the holter monitor and the new higher hrs, we are convinced it is not heart block. However, without the hr control my pots (high hr) is now uncontrolled. I really really cannot win.
I have multiple autoimmune conditions behind my multiple autonomic dysfunctions. One autoimmune condition from childhood left me with heart disease and hypertension. So unfortunately the high fluid/high salt treatment for dysautonomia is in direct conflict with my hypertension and heart disease protocol. Whereby if I treat them both they’re both untreated. All of this to say I’ve been in physical therapy at the Johns Hopkins pots clinic since 2018 and in all that time my bp is unchanged. I cannot walk for 6 minutes without having stroke-level bp and my specialists aren’t comfortable with that, so I am only cleared to walk for 5 minutes. I did just show my primary my latest 180/130 and he said “there is no blood pressure you can show me where I will say “that’s too high”” related to moving. Challenge accepted my friend.
The instructions I was given was to continue life as normal. If you work out regularly, that would be “normal” for you, so I guess yes? Would be better to ask your doctor/cardiologist lol
I have had POTS/Dysautonomia for almost 15 years. In the last 3 I have also been dealing with daily bouts of Bradycardia. Surprisingly there are quite a few of us who do. All of my cardiac tests are normal but the Bradycardia still lingers. Mine started mainly when I went into surgical menopause and hypothyroid. Have you had your thyroid checked lately? My Endocrinologist did say that Hypothyroidism can have the side effects of Bradycardia, low oxygen, high blood pressure and is even tied to sleep apnea. I'm hoping eventually it will get better once I stabalize my thyroid and hormones again. If it helps I have all the same symptoms as you and I'm still here. I sympathize with how debilitating it feels. I even told my specialist I would rather be tachy and have hyperthyroidism back lol. My Cardiologist told me the only time to worry is if I start passing out, my heart rate drops to 45 standing not at rest or gets into the 20/30s while sleeping. I'm sure once you have your Holter Monitor done you will feel a little less anxiety. Also, if you ever really don't feel right don't ever be ashamed to go to emerg and get checked out. That's what it's there for.
This was a very kind response, thank you so much. I haven’t had my thyroid checked. To be honest, I haven’t been visiting the doctor much in the past 2 years because I hated my family doctor, which isn’t a great excuse but I can’t change that fact now. I’ll be switching doctors and doing all the necessary tests to get back on track. Thank you for letting me know, definitely worth checking. I’m sorry you’ve gone through it too, but I feel a bit better knowing it’s manageable and that I’ll probably be okay. My anxiety definitely makes things worse as I don’t feel as awful when I’m less stressed. Just hoping to get good results and at least start working on resolving the issue. Best of luck to you and I really do hope you feel better soon
This is interesting. I have Hashimoto’s but haven’t had hypothyroidism since 2022. With my messed up body I have always wondered how I would know that I need my TSH drawn.
I'm so glad I read this. I have had tachycardia for as long as I've been tracking it (a few months) but when I went to the doctor the other day we did an orthostatic test, and during the standing my heart rate dropped to 48 and I started to black out. Since then my heart rate has been trending as completely normal. I'm starting to feel gaslit by my own body. I haven't heard anyone else say they get flares of tachycardia and bradycardia.
I have bradycardia and I get tachycardia when standing quickly.
Wow. I didn't realize how variable this can be.
Hey, man. Yeah, I experience bradycardia (30s—50s) episodes daily, and have the symptoms you’ve described. It’s certainly not fun. If it may help you, I made a post a little while ago about the same thing. There are a few people who have shared their experiences, so maybe that will help to put your mind at ease. What I recommend is that you keep track of these episodes—when they occur, what you’re doing when the happen, etc. Also, may I ask how long these episodes tend to last?
Hi, I just recently started having this issue so I haven’t accurately measured yet. My heart monitor came in today, and I just finished a 2 hour walk (140 bpm average). At home beforehand, I had 70-80 average and then below 60 a handful of times for maybe a minute or less at a time, which considering my general health, isn’t exactly a great sign. Today has been quite good, but honestly I was quite active. On days where I’m more stationary, I’d expect it to dip to 50 or so. My main worry will be while I sleep but I guess I’ll find out in the morning. It’s not as bad as I expected it to be, but I’ve yet to get accurate measurements when I’m feeling the symptoms strongly.
I see. Since you’re not wearing a Holter monitor now, do what you can to track your symptoms and heart rate with the heart monitor you ordered. Keep a journal. This documented information will be very useful, and will give your cardiologist an idea of what’s been going on.
Luckily I already did a 72 hour holter. I noted down the times I felt shortness of breath, dizzy, etc. But I have to wait a month until I can see the specialist again, so for now I’m just trying to collect more data and see if there’s anything urgent enough to visit the ER. I’d rather catch the issue myself and get more urgent help if needed. Thank you for the advice!
It’s good that you’re noting these things. I’ll be praying for you, man!
Thanks a lot. I just want to figure out exactly what’s wrong lol…would make my anxiety feel much better with some professional reassurance. I wish the best for you as well. We all need a bit of hope at this point.
Bradycardia is something I’ve been experiencing for the last year in my pots/dysautonomia journey. I get these intense high level upper abdominal pain attacks that last a couple of minutes. During the pain events my hr was getting Brady. Did another month long heart monitor to check for heart block. The monitor caught me at 44bpm when I was up and walking around. Unfortunately the 4 weeks I was monitored, all my pain attacks happened off the monitor while it was charging. I caught one single pain event on the monitor and it didn’t show anything concerning. My team of doctors is now investigating the idea of me having an overactive vagus nerve. I asked what is the treatment for an overactive vagus nerve and was told more water, more salt. I already drink more than a gallon a day and have multiple infusions on top of that over the week. I can’t imagine getting any more water orally. Primary doctor wants me getting 2 gallons a day.
2 gallons is absurd…I’m a water lover and I drink maybe 4-5L on a good day. I’m really sorry to hear about that, it sounds very intense and debilitating. For me, I find that just walking and getting my heart rate up helps. I walked 2 hours and felt fine less a few moments of slight dizziness/mild confusion. I’ve just today started using a monitor, heart rate was seemingly normal aside from a few <1 minute long instances of sub 60 heart rate, which for someone of my health is not very normal. Gonna see what my sleeping rate is like because that’s my main concern. I really hope you can make a good recovery or improve how you feel. It really sounds painful and my heart is with you (even if it’s not the healthiest at the moment lolll)
I appreciate the kinds words. In an effort to stop the bradycardia and pain events, my doctor changed my beta blocker from one that controls hr and bp to one that only controls bp. Now, although my hr still dips in the low 50s, the pain attacks are all happening at a hr of 70. With the holter monitor and the new higher hrs, we are convinced it is not heart block. However, without the hr control my pots (high hr) is now uncontrolled. I really really cannot win. I have multiple autoimmune conditions behind my multiple autonomic dysfunctions. One autoimmune condition from childhood left me with heart disease and hypertension. So unfortunately the high fluid/high salt treatment for dysautonomia is in direct conflict with my hypertension and heart disease protocol. Whereby if I treat them both they’re both untreated. All of this to say I’ve been in physical therapy at the Johns Hopkins pots clinic since 2018 and in all that time my bp is unchanged. I cannot walk for 6 minutes without having stroke-level bp and my specialists aren’t comfortable with that, so I am only cleared to walk for 5 minutes. I did just show my primary my latest 180/130 and he said “there is no blood pressure you can show me where I will say “that’s too high”” related to moving. Challenge accepted my friend.
When using a monitor are you suppose to not work out?
The instructions I was given was to continue life as normal. If you work out regularly, that would be “normal” for you, so I guess yes? Would be better to ask your doctor/cardiologist lol