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Wondering If Anyone Has Had A Similar Experience With Exercise?


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I’ve had POTS for five years now and am trying Dr. Levine’s exercise protocol – not as part of the study so I don’t really have anyone to give me feedback. I’ve tried exercising before, but would always overdo it and pass out shortly after stopping. I’m now 4 weeks in and I find that I can do the exercise without the immediate dizzyness, but it’s made my POTS symptoms MUCH worse. I’ve read posts from other’s who have tried to exercise and it seems like I’m having a different experience so I’m hoping to hear from someone further along in an exercise program that had a similar start.

First, I have no problem getting my HR up, but I do find it difficult to keep below the max rate prescribed – on the rowing machine I keep having to slow down, and for the strength training my HR goes above 150 every time. Second, I was told to expect fatigue for the first month (which has been very true) but it seems to be more than that. I’m having a lot of tremors, my chest is very tight and I’m near passing out more than I was before starting. Finally, when things get bad I’ve usually been able to recover (for a little while) by getting a saline IV. The last few weeks I’ve tried this several times and it hasn’t stopped the symptoms like it usually does. I really want this to work and I’m willing to push through if there’s a hope that things will improve. Has anyone else been able to push through and come out ahead?

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Hi Ellen.

After a visit to Cleveland Clinic in Feb I started my own similar adaptation to Dr. Levine's program based on recommendations from Cleveland Clinic's Cardiac rehab.

At that time I could exercise for between 10-15 mins on a recumb bike IF I was having a "good day.". As I spent most of my days in bed. I returned home to FL and had my doc write a script for cardiac rehab. So I worked out w the heart surgery recovery patients for about 6 wks monitored via EKG and supervised by the nursing staff. I was having some abnormal rhythms but nothing to be concerned about and like you have no problem getting my HR up but struggle to keep it in a good working zone. (140-150). It was common then for the nurses to come over and tell me to slow it down on the rower bc I was getting my HR too high. (this continues to be an issue today)

Following discharge I have been working with Amanda, an exercise therapist and former PT. I started all recumbent. Bike, rower, mat for strength and stretch. Like others, I would frequently crash after exercise. In fact, I used to plan on going right to bed following every workout. Over time, however, the amount of recovery needed is overall less and there have even been times when I've had a workout and then ran errands. And, like you, I've been very persistent in making this work bc I know that movement is good. If I feel bad, (unless I'm in a really bad crash) I put on my sunglasses, plug in my headphones, look down, don't make eye contact and make my way to the recumbent bike in the gym and just pedal moderately for 30 mins.

I now workout between 3/4 days a week- (tried 5/6 a while back but had to scale back bc it was too much) almost all cardio is still

recumbent bc I tend to grey out when I get upright and exercise. On a Good day I workout for an hour- bike for 15, rower for 10, circut strength training on machines with "sit/stands" in between to keep from blacking out. I have to really watch my HR bc anything I do that is "strenuous" (jump, squats w pulley weights/ ropes/ almost anything over my head) and I'll be in the 170s quickly. So for me the balance is not blacking out and keeping a good HR. Amanda will make me walk, slow breathe and sometimes lie down between each circuit to get HR down. She'll mKe me do about 15 sit/stands quickly between circuits to keep from blacking out. It's kinda funny bc I'm the only one in the weight room who is told by the trainer to rest, walk, even lie down. The regulars have come to know me as that person w the weird HR.

Exercise has helped me immensely in having the strength to resume a few of my previous activities I an adapted way. Almost everything I do is adapted- from groceries to driving to going to church- some of which I can't do at times even now. I'd say that the exercise has done nothing to improve my symptoms, in fact, at times it makes them worse but I am slowly getting stronger and improving the amount of things I can do.

Biggest tip: if you feel like you are pushing yourself- slow down. (I can say this to you but it is very hard for me.). Better to go slow and steady than push it bc when I push it I'm much more likely to crash afterwards.


Edited by corina
corrected the word visit
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I am going to try to remember as I am in the ninth month of what I call a serious exercise routine. I, too, had Dr. Levine's program, his three month one, though I was not an official participant in the study. I was too old. They were then gracious enough to send me an additional 3 month more difficult set of exercises that I did. I then repeated the "sixth month" two more times for a total of three "sixth months". I am now on my own as they will no longer recommend anything further and consider me "fit".

I was able to walk on the treadmill to begin with as I had already been doing a small amount of that. For me personally, the rower would be too much even to this day. It is way too much movement of too many muscle groups at once. I won't even try it. I prefer the treadmill because I could slow it way down, though for me as a POTSY, slowing it down too much could mean making me more POTSY and dizzy with a higher heartrate.

If I remember correctly, I had a difficult time keeping my heartrate down when I first started exercising. Also, as I said, if I tried to slow the treadmill down, that did not help to decrease my heartrate either. So, if the cardio nurses are saying to lay down or slow it down, I have to agree.

For me, I think I just struggled though the first three months. I remained on the treadmill, but I could see obvious improvement over time in my heartrate and what I could do. I kept notes of everything on the charts that they gave me. It was not uncommon for me to go home and crash. I still do that if I feel like it. It's part of who I am and what I need.

On to the months four through six which were not part of the study ever, but were given to me after I asked. This was even more difficult. I remember thinking that I knew why this was called a work out. It was because I was always working so hard. There was day after day of 45 minutes - 1 hour of working out. This was not easy. It really wore me out. I must be a masochist because I did it anyway, even if it made me tired and in need of more rest.

Fast forward to now, in my own routine after repeating month six for three times total. I have decided to jog, just because I used to do this in my thirties. I am now 61 years old. I never have gone past jogging for 1 mile, even in my thirties. Well, I have decided that the exercising almost every day, which is what month six involved, was too much for me, so now I do the aerobics Monday, Wednesday and Friday, and the weights on Tuesday and Thursday, and I do nothing except my usual life on the weekends. When doing the Levine month one through six, I would frequently append the weight routine to happen after the aerobics.

So currently, unless something sets me back, I warm up on the treadmill at 2.5 mph for three minutes, then jog at 4 mph for 1 mile, then remain going at 2.5 mph for a total of 45 minutes, for a distance of 2.?? total. I cannot tell you how excited I am that after all this working out at inclines and time on the treadmill for nine months, I can jog. I find the jog preferable to the high inclines I was needing to get my heartrate in the zone. I was needing increased inclines because I was becoming more fit.

As a matter of fact, after consulting with the Levine people and telling them that it was becoming too difficult to get my heartrate up and keep it there, she had asked me to forward them the average over three days of my resting heart rate after waking up in the AM. The zones were recalculated for me at about 5 beats per minute lower in the base pace and the maximum steady states because of my increased fitness.

Conclusion: I still have POTS. I still have MCAS. I still crash after exercising, but not as severely. I can do more things without horrible POTS symptoms for longer periods of time than before exercising. I will probably keep this up, or whatever I can keep up, for the rest of my life. I will not do the recumbant bike. It hurts my knees. I will not do the rower. I can tell when I used the rowing weight machine how difficult it would be for me to do that motion for many minutes. I would be tachycardic for sure and require a major recovery.

And, oh yes, at the beginning I would have days in which I was suffering from tachycardia late in the day because I had been exercising earlier and it was too much for me at the time. So, I don't know what to tell you all except that having the cardiac nurse monitor is a good idea, and do not expect to get the benefits that normal people get after exercising in which they feel energized and great afterwards. This never happened to me. I notice an improvement in my fitness, and how my regular life is so much easier than exercising. All for now folks. Good luck.

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I have read alot about why exercise should benefit a person with POTS. Exercise stimulates many different systems in the body, which brings me to the conclusion, that you really need to be able to recognize when to stop. My son is just now able to stand up for 20-30 minutes a day and play on the xbox connect but it took him 10 months to get to this point. He would like to be able to play longer but when he does his tremors and shaking may suddenly get worse again. I wonder because of his age (12) if hormones has anything to do with this and if too much exercise will over stimulate the hormones. So for the time being, I monitor his exercise time and his heart rate. Exercise has definitely benefitted him because he was bedridden for almost 4 months. Exercise can be boring so he does change to different exercise activities. The varation helps keep him exercising everyday. All I know to suggest is not to overdue the exercise and skip a day if you need too because you may run your body futher down if you don't give it a rest. My son was only able to exercise a couple times a week and had to build up to doing it everyday. Some weeks he still has to take Wednesday off because of how he feels. Hope this helps.

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Thank you all so much for taking such time to reply! I'll try to continue the exercise but slow down when I'm doing it. I've never tried sit/stands, but I think I'll give it a try since one of my problems has been walking to the next machine at the gym. Thanks again, it's so nice to hear from people that understand what it's like!

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