I understand that many people with dysautonomia have tachycardia (POTS), but does anyone else here have bradycardia? I am 100% pacemaker dependent.

I have not been officially diagnosed with dysautonomia but I have many of the symptoms. So far, there is just one doctor listed on this site for Canada. Unfortunately that doctor is well over 3,000 miles away from where I live.

I do feel better eating a high-sodium, high-protein diet and eating several small meals a day.

I have both at times. My heartrate is often in the low 40s, especially when I am sitting or lying down.. I never know from day to day what it's going to do. I have other heart arrythmias that make my resting heartrate really fast at rest sometimes then the brady issue that makes it go too slow. Then, there's the POTS that makes it go too high when I stand up. Throw in the afib & atrial tachy and I'm hard to treat -

Don't know about a pacemaker in the future - we're trying other things right now. I wouldn't be adverse to the idea if it would stablize things

I'm not sure if it's braycardia but when my heart rate gets too low I feel so weak, it's unreal. My cardio has suggested the possibility of needing a pace maker at some point, but I've been to scared to go down that road at this time.

I have bradycardia too. I rarely get tachy. I have ncs. A pacemaker is possibly in my future. But I have more pressing issues now with the gastroparesis and facing a feeding tube. My ncs has gotten better since the cardiologist raised my norpace.

michelle

Kadje,

Where in Canada are you? My POTS specialist is Dr. Schondorf - the one listed - he is 2 hours away so it is more convenient than for you but still not totally convenient. I saw him this year with some new issues but hadn't seen him in about 5 years b/f that. I have an ME specialist here in Ottawa.

Anyway when I was last there his technician was telling me there was a doctor in from somewhere out west that was looking to start up an autonomic lab. If you are out west maybe you can call the office and get some info on that. Also there is a doctor in Hamilton ON who I never heard of but bren22 on this forum sees him - not sure if that would be closer for you.

Good luck,

Donna

Hi Donna,

I live in central BC. I will make a note to possibly contact Dr. Schondorf to find out more. Thank you!

Hi Michelle,

Thanks for letting me know that you have bradycardia, too. I agree, the gastroparesis and possibly getting a feeding tube is more pressing right now. I'm sorry you are going through that.

quote:

Originally posted by michellelynn:
I have bradycardia too. I rarely get tachy. I have ncs. A pacemaker is possibly in my future. But I have more pressing issues now with the gastroparesis and facing a feeding tube. My ncs has gotten better since the cardiologist raised my norpace.

michelle

Hi Living4mygirl,

Yes, that's what bradycardia is, a low heart rate. I certainly understand your fear about going down that road. Fortunately for me, I had what they call "total heart block" (Stage 3 - as bad as it gets) so I didn't have to decide or agonize about it ahead of time. I was just relieved when they put me in a bed and told me not to get up except to go to the bathroom (which I managed to talk them into, as the nurses wanted me to use a commode beside my bed - the bathroom was only a couple of feet away). I know what you mean about the weakness when the heart rate is too low.

quote:

Originally posted by Living4mygirl:
I'm not sure if it's braycardia but when my heart rate gets too low I feel so weak, it's unreal. My cardio has suggested the possibility of needing a pace maker at some point, but I've been to scared to go down that road at this time.

Hi Trebleclef,

Thanks for letting me know. I am getting lots of information from this forum.

As you probably know, a pacemaker would keep your pulse within a certain range. It doesn't treat the other arrhythmias. I am very sensitive to arrhythmias that, apparently, most people don't feel (I was told?). I get PVCs and AVCs and I can feel them.

I hope you find something to help you with your heart problems.

quote:

Originally posted by trebleclef:
I have both at times. My heartrate is often in the low 40s, especially when I am sitting or lying down.. I never know from day to day what it's going to do. I have other heart arrythmias that make my resting heartrate really fast at rest sometimes then the brady issue that makes it go too slow. Then, there's the POTS that makes it go too high when I stand up. Throw in the afib & atrial tachy and I'm hard to treat -

Don't know about a pacemaker in the future - we're trying other things right now. I wouldn't be adverse to the idea if it would stablize things

I am glad to see I'm not alone - I have bradycardia as well and just found out yesterday that what I've been feeling are PVCs that most wouldn't feel. I was told it was something I could help with 2 - 3 liters of fluid each day plus a high sodium diet and at least 30 minutes of exercise each day. Basically he told me that he's the only doc in the area that treats this and there is nothing else we can do. He says a pacemaker is not the answer. I am on Florinef twice a day now. I hope you're able to find someone to help you in Canada.

Thank you, Blessed Mom. I hope the Florinef and extra fluid and diet and exercise work for you.