aelizabeth3300 Posted April 3, 2019 Report Share Posted April 3, 2019 Hello everyone, This is my second post in this forum. My question is geared more towards those who have an exercise intolerance not with syncope, but with tendency for an extremely high heart rate upon exercise. I've always been an active kid, but a couple years ago (way before my diagnosis or any other severe symptoms), I noticed my HR gets extremely high with minimal exercise. I could jog for like 3 minutes and it would get to 200. I realize now that this is why cardio was alway increasingly difficult for me. Since my diagnosis, I've been really busy (and also nervous) to start exercising again, but I know I NEED to. My question is, how did you guys start exercising? What exercises did you do to tolerate the high heart rate? Did it eventually get better? How long did it take? Questions like that, I really need advice on this topic. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 3, 2019 Report Share Posted April 3, 2019 Very slow exercises, to your tolerance. I started with recumbent exercises, then sitting and then graduated to walking, a few minutes every day. I also do core and leg strengthening exercises and mild weight lifting. But I only do ONE group of exercises a day and divide up over the whole day. I started off by doing one exercise whenever there was a commercial on TV. That can be a lot during an hour show - you may not be able to do that at first. ? We have to pace ourselves - too much exercise will make us worse - so will no exercise!!!!! Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 3, 2019 Report Share Posted April 3, 2019 Hi, if tachycardia is your main issue have you tried any medication to control that? You may then find exercise easier. Do you have symptoms along with the tachycardia? B xxx Quote Link to comment Share on other sites More sharing options...
JimL Posted April 4, 2019 Report Share Posted April 4, 2019 http://www.dysautonomiainternational.org/page.php?ID=43 Quote Link to comment Share on other sites More sharing options...
p8d Posted April 4, 2019 Report Share Posted April 4, 2019 Start slowly, recumbent if necessary, give yourself rest days but try to a bit every day. I agree with @bombsh3ll on beta blockers, are you on any? Quote Link to comment Share on other sites More sharing options...
aelizabeth3300 Posted April 6, 2019 Author Report Share Posted April 6, 2019 @p8d @bombsh3ll Yes, I'm on beta blockers, but they don't help much with exercise tachycardia. My resting rate is much better, but the exercise intolerance is still pretty severe. I've noticed a significant decline in my tolerance over the last few years despite periods of exercise. However, I'm not really supposed to be on beta blockers because I also have an AV block (aka heart block). Quote Link to comment Share on other sites More sharing options...
aelizabeth3300 Posted April 6, 2019 Author Report Share Posted April 6, 2019 @JimL Thank you so much for sharing that link. It's actually very helpful! Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 6, 2019 Report Share Posted April 6, 2019 @aelizabeth3300 - I did not get relief until I found the right one for me after 4 tries ( carvelidol ) and once we determined that I tolerated the lowest dose we increased it. Just taking BB may not be enough, you may have to increase the dose slowly like I had to. I started at 3.125 mg and now am on 25 mg - just to show you how much I had to slowly increase to get the right effect. Depending on your type of POTS you may not need to increase as much BUT - if the current dose is not enough you may want to ask your doctor if you should increase the dose slightly to see if it helps. In my case this was the ONLY way to find the right dosage of all of my cardiac meds - slow adjustment. Quote Link to comment Share on other sites More sharing options...
JimL Posted April 8, 2019 Report Share Posted April 8, 2019 On 4/6/2019 at 11:22 AM, aelizabeth3300 said: @JimL Thank you so much for sharing that link. It's actually very helpful! You're welcome Quote Link to comment Share on other sites More sharing options...
aelizabeth3300 Posted April 8, 2019 Author Report Share Posted April 8, 2019 @Pistol Increasing my BB dosage is not an option. Like I said, I'm not supposed to be taking BBs because of an AV block. Quote Link to comment Share on other sites More sharing options...
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