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goodnuff77

Retraining Heart?

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So a little confused. My doctors in the past put me on a exercise routine to retrain my heart as they call it. I was supposed to bring my heart rate to 130 for 10 minutes of exercise everyday. Well that didn't go well for me and they labeled me exercise intolerant. Now I have a new Doctor and he wants me to try again but this time bring my heart rate to 130 for 30 minutes twice a week. Nervous about this but going to give it a try.

My question though. If my heart rate goes 130 and higher just from standing and just keeps going up while upright. How does doing the exercise differ? Just not sure if I can do it without increasing symptoms causing me to be in bed ill. Isn't the elevated heart rate all the same? I should mention I was in great physical health when I got sick and of coarse not so much anymore. Just don't want to do anything that's going to make dealing with this illness worse.

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Exercise is more about trying to retrain your system to be exercise tolerant than getting your heart used to going fast. Like you said it's already used to that. The more unfit a person is, the higher their heart rate in general and the quicker it speeds up. But that doesn't mean it makes you fitter unfortunately.

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Guest maia

Yup, doesnt make any sense to me either. If your heart goes up to 130 standing then apparently youre already getting the exercise nesessary to get it to that point, and if it keeps going higher with no standing...well, same thing.

Unless of course the exercise they want you to do is supine or on a recumbant bike.

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We have problems with blood flow. If the only thing helping our heart and circulatory system to pump is our heart and our muscles (especially in our legs) are not helping with this --then the heart over works trying to move blood around. If we get more fit and get our circulatory system working better with the help of the muscles in the legs --which help pump blood (especially to our heart and brain), it will take some of the effort off the heart. It should with time improve things. It will have to be done very slowly as most of us are in a deconditioned state and we just can't jump into it. Some people have had testing to find out that very little movement starts one into a decline and you have to stop before that happens. I have found that when I walk on an elliptical and that's what I'm focused on - not just walking around the house - my blood pressure actually improves and my heart rate goes down instead of up. The legs are improving the blood flow and then the heart can slow down. If you can only do one minute today -- that's one minute you didn't do yesterday. Don't think you have to do the whole 30 minutes to start with ---that's just not possible. Build up with that as a goal and with time you should notice some improvements.

Issie

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I was told its a nerve problem not muscle heart problem so its the brain misfiring signals. excercise didnt help me so I gave up on it.

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I agree with what others have said. Increasing our leg muscle mass is paramount in order to push blood back up. When I was in cardiac rehab (and they had no experience in dealing with a dysautonomia patient), they put me on the treadmill, the recumbent bike, etc. and expected me to perform for a set number of minutes. I quit the program and did exercises myself (albeit suggested by a physiotherapist) to strengthten my leg muscles at my own pace. It took a bit of time, but I went from being semi-bedridden to quite functional. My HR still shoots up by at least 50 beats when I stand, but goes from 50ish to 90ish/100 instead of going from 70s to 140s/150s.

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It worked for me....at least it was one of the things. I think it is a leg muscle issue in needing to pump the blood and also a nerve issue in terms of misfiring. But I think exercise at a pace that works for you is definitely neuro re-training. I did the same thing with noise (radio in the car) and light....essentially building my tolerance up slowly over a period of time. Stressing my senses but not sending them into spazzz-town. At the height of my flare I was pretty bed bound, in the dark and needed near silence. The re-training works; the more I catered to symptoms the more sensitive I became. Good luck with your attempts. Be patient. And don't give up!!!

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I've been exercising for 3 1/2 weeks on the floor cardio, I can now do 40 minutes at hr 150bpm. My heart rate was going from 70's sitting to 110-120 standing, now it will go up that of a normal person or a little higher.

I continue to exercise and plan to get to 1 hour at 150bpm and then start with interval training.

My plan is to get my heart as fit as an athletes, such as increased cardiac output and strength will get more blood up when you stand, the force of it will also stop blood pooling as much. Next, I plan to build my legs as much as possible to try get to a more fitter state.

I believe exercise can be very very useful with POTS, I dont have any cause of POTS though and its not hyper either so not sure about other people, I hope it retrains my brain also as an added bonus and sorts me out!

I've learnt, never give up hope.

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Amen, Andy. Great work mate. That's really impressive that in just 3 1/2 weeks you have seen such an improvement. I've been at it for 3 1/2 months ha... but I was going 60s/70s to 140s and now I'm down to 60s/70s to 110s/120s (when I first stand, goes down with walking) so I have seen some improvement too... just not as much as you. Of course I'm not quite able to get up to what you're doing. I'm at 35 minutes on a recumbant bike 4-5/days a week and leg strengthening the other 2 - getting the heart rate up to 160 on the bike, but it's only that high for about 10 minutes of the 35. It's mostly in the 100-140 range for the rest. Perhaps I will see more improvement as I get further along.

Anyway, really impressed by what you've done, Andy. Keep it up.

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I've tried midodrine, atenolol, and clonidine. They all did lower my heart rate but not enough to be worth the side effects. So I'm not on anything for the heart rate, and just a bit of supplements, famotidine/carafate for the gasto issues from the disease. I know now that my underlying condition is small fiber neuropathy, so while I'm trying to improve the heart rates through walking 100+ minutes a day and the aforementioned exercise - my research/disease goal is now focused on the sfn (although it may apparently get better on its own the doctor says... we'll see).

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