futurehope Posted March 20, 2012 Report Share Posted March 20, 2012 I just started about two weeks ago. Was wanting to hear from others. What are you supposed to do after the three months is over?Thanks in advance. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 20, 2012 Report Share Posted March 20, 2012 I was wondering about his program, so will be interested to see what people say also. How is it going so far? I find I feel a little better after cardio exercise but it speeds my HR up. ( like 90 standing to 115 standing for the next few hours afterwards ) I have no idea why but went for a walk today for 2 miles and was thinking I should exercise daily.Does the program require you not to exercise standing up? Is there an advantage? Is it supposed to be for all types of POTS patients? Quote Link to comment Share on other sites More sharing options...
martiz Posted March 20, 2012 Report Share Posted March 20, 2012 Futurehope: I have been on and off (mostly off) the protocol for about a year. I was never able to do Month 1 - 3. I had to start with Pre-Month 1 & 2. The furthest I was ever able to get was the end of Pre-Month 2 and just the very beginning of Month 1. Usually, a couple of weeks of Month 1 and I have to drop back down to Pre-Month 2 again. (this is different for each person).This is not a cure. As soon as you stop the protocol, the symptoms come back. If it works for you, you have to regard it as medication - it must be done regularly. My endo feels I should do less but do it every day as opposed to 3 x per week as is normally written. Someone posted a link that showed that the bad effects of deconditioning can occur after 20 hours of inactivity. - Dr. from Mayo - Dr. Raj?) so every day or twice a day is a the modification that I have made to his protocol. Also, I try to keep my HR to the base pace and have not gotten to the higher levels.Once you complete the Levine program, you either continue at the final level indefinitely or you can increase the length of time or increase the level of exertion. You just can never stop (I'm fine with that if I got some relief).Potluck: The first part of the program is exercising while sitting down using a rower or recumbent bike then as time goes on, progressing to treadmill and other upright exercises. Currently, I am exercising while laying down as I have been very symptomatic lately. I mounted my cheap tabletop cycle to the wall and I lay on my back on my bed and cycle while watching a movie. I find that if I am not standing, I can exercise for longer with less symptoms which is better for me in the long run. I do not know if Dr. Levine means for it to be for all types of POTS patients. Personally, I believe he is only looking at one subset - those with POTS that was caused by deconditioning. I think it will work well for these patients. For everyone else, I think the program would be useful but still just one small piece of the puzzle.Lately, I started (again!) with 5 minutes twice a day and I am up to 20 minutes daily (some days doing it twice a day but not consistently enough to say 20min twice a day.)Marti Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 20, 2012 Report Share Posted March 20, 2012 I see you're not getting much response. I asked this same exact question about 6 months ago and didn't get any response (or hardly any) either. I was curious also. Quote Link to comment Share on other sites More sharing options...
ACB Posted March 21, 2012 Report Share Posted March 21, 2012 Last week, I finished the third month of the protocol. This is the second time I've completed the three month protocol from Levine.The first time, I was wondering how to proceed after month three, so I contacted the PT on Levine's team. She sent me an unstudied, but recommended, extra three month protocol to do. In the second week of it, interval training started. Unfortunately, those interval workouts caused my POTS sx to increase substantially and I got a superficial blood clot in my leg that I'm still dealing with. There was no way to know how my body would respond to taxing it even further with those intervals without trying it, though.I did the protocol April-June of last year and then started the additional protocol in July. In July, the blood clot appeared and I started feeling worse, so I decided to lay off the exercise to let the clot heal and go to Mayo for a full eval. I went to Mayo in late October and by then my clot was doing better and I was doing worse from not exercising at all.When I got home from Mayo in early Nov, I restarted the Levine protocol from the beginning and have just now finished the three months. (I took my time this time around.) My clot feels like its trying to return, so now I'm using aspirin and wrapping it during workouts and that's helping. Mayo recommended that I wait 6 months to a year before trying intervals again. I totally agree. So, I'm just going to repeat the last two weeks of the protocol for a while and see how I do and go from there.For me, exercise has not been a "cure." It has, however, been the best tool for symptom management that I've tried. I've tried about 10 meds that haven't worked and am currently on a couple that seem to help with some sx. Salt/water loading does not seem to help me. Compression hose do seem to help, but exercise has allowed me to go from wheelchair bound to leaving the house almost everyday - even with my three-year-old in tow! That's a BIG change.As an aside, I know a lot of dinet posters comment that people leave the forum when they get well. I sure as heck did that last June/early July. However, since then, I have been reading almost daily. I haven't posted because I usually read on the iPod and there is NO way I could write a post on that tiny keypad. Just wanted to point out that some people may still be lurking like I am. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 21, 2012 Report Share Posted March 21, 2012 I think they view exercise as a way of retraining the body and making POTS patients more confident and trustinf of their bodies. Im going to give levine's exercise protocol a go but I must admit that heavy exercise was still happening two days before my last relapse.As for 20 hours for deconditiong - that was one of the Levine crowd. their work also demonstrated that highly fit people took longer to recover from deconditioning than people of average fitness. Just a thought...mestinon helps me exercise heaps. Infact i feel best exercising on this medication. Work is still a HUGE struggle... Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 21, 2012 Author Report Share Posted March 21, 2012 ACB,I very much appreciate your post. Blood clot? Those are dangerous. Why would anyone continue exercising with a clot? Why would intervals cause clots, any idea?Be well. Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 21, 2012 Author Report Share Posted March 21, 2012 ACB,Another question. Do you feel exercising every day is the way to go, or are there days off? TIA Quote Link to comment Share on other sites More sharing options...
ACB Posted March 21, 2012 Report Share Posted March 21, 2012 Futurehope, I should've specified that the blood clot was in a superficial vein. Not life threatening, just a bit painful and a little ugly. I think exercising everyday would be great. That said, I don't do it. However, I don't take off more than three days, and rarely that much. Usually, I exercise everyday to every other day. That seems to work best for me.Hope this helps! Quote Link to comment Share on other sites More sharing options...
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