julieph85 Posted February 16, 2012 Report Share Posted February 16, 2012 Has anyone on here actually tried it? I know we talk about it a lot. I've contacted his office and requested they send me the info. to apply. I believe I match all his criteria. I'm going to give it a go because if anyone has POTS due to deconditioning it is probably me- mine started at the end of 14 weeks of strict bedrest during my pregnancy. I also can't tolerate beta blockers which I have read is common in POTS caused by deconditioning- because of the reduced stroke volume. So, we'll see. I will let everyone know how it goes! Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted February 16, 2012 Report Share Posted February 16, 2012 I signed a paper saying that I can't talk about it but I can say though it is really hard and takes a lot of dedication. If you are ready to fully dedicate yourself and feel like crap then go for it! LOL it has been proven to help many recover from pots but I have had lots of flares and have been really sick since starting the program. I don't believe the program works but my doctor who referred me insist that i stick with it. He told me it will only get worse before it gets better. So I am trying to push through. I do think you have to have a doctor refer you though i could be wrong though. Wish u all the best Quote Link to comment Share on other sites More sharing options...
maggie Posted February 16, 2012 Report Share Posted February 16, 2012 I was accepted into this program and when my neuro saw what was required, he stated forget it. I am exercising now and have decreased my heart rate by 20 beats per minute in six months. I started with only 15 minutes and am now up to one hour a day. You can try it and see if it works for you, but I know it would never have worked for me.Maggie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 16, 2012 Report Share Posted February 16, 2012 I am exercising now and have decreased my heart rate by 20 beats per minute in six months. I started with only 15 minutes and am now up to one hour a day. That's incredible - can you say specifically how you started and what you are doing now? Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted February 16, 2012 Report Share Posted February 16, 2012 Yes I did the first month like the protocol says to do and then for the next 3 months I did my own version of it. It had a dramatic positive effect on me. I went from 3 years of house/bed bound to being able to take my daughter to school, go to church, eat at restaurants, vacation etc. After those 4 months I started losing some motivation because I seemed to be hitting a plateau with how much I was improving. Looking back though I wasn't really increasing my program either. I was staying on the recumbent bike instead of moving up to the stationary and then on to the upright machines. Maybe thats why my progress stalled. Either way I quit all together last August and now I am starting to see a lot of symptom return that had gotten better with the exercise. I'm kicking myself for not just pushing through because I am about to start it all over again. The only positive is that I am still in a better place than I was this time last year when I started so I am hoping that when I re-start I will see improvement really quickly. Quote Link to comment Share on other sites More sharing options...
cma Posted February 16, 2012 Report Share Posted February 16, 2012 I am exercising now and have decreased my heart rate by 20 beats per minute in six months. I started with only 15 minutes and am now up to one hour a day. That's incredible - can you say specifically how you started and what you are doing now?Yes, yes please share your exersice routine. I would like to hear it as well. I've been exercising for a while on a recumbent bike, but I haven't been able to reduce my heart rate at all. I would like to know what I'm doing wrong, maybe I need to push myself harder. Quote Link to comment Share on other sites More sharing options...
jangle Posted February 16, 2012 Report Share Posted February 16, 2012 I also inquired about the Levine protocol, but you're not allowed to talk about it. I haven't actually gotten the protocol yet, but to be honest I read the study with the military soldiers over in Europe and they got better with jogging.I don't think there's really any difference in the type of exercise, if you can jog you can do that. Recumbant bike should also work as well. Right now I'm jogging but I don't want to sound like that's the best way because I have no idea. Quote Link to comment Share on other sites More sharing options...
derekliz Posted February 16, 2012 Report Share Posted February 16, 2012 Why is his protocol so top secret....just wondering? Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted February 16, 2012 Report Share Posted February 16, 2012 Hey. So I had to sign papers saying I would not talk about it, and I am not sure why. That is a great question I asked my mom the same thing and she was like idk why its so secretive but just dnt dicuss with others. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 17, 2012 Report Share Posted February 17, 2012 ive always improved with jogging and keeping as active as possible. But I still relapse unfortunately even in the same week Im exercising hard. Quote Link to comment Share on other sites More sharing options...
maggie Posted February 17, 2012 Report Share Posted February 17, 2012 Namoi,I was riding a recumbent bike for three years and was just so sick of it I couldn't do it anymore. What works for me is I found a dance studio who has an instructor who took me on as a challenge. I think exercising upright instead of sitting down helped. My balance was terrible and with the dance lessons slowly improved. I wear a heart monitor to keep track that I don't go too high and we just started with learning how to dance a few slower dances. I started out with a rumba which is quite simple, plus my instructor toned it down to where I wasn't moving too much at first. As my heart rate went down he increased the movement slowly and that is how I was able to get my heart rate down. My neuro is so impressed with my improvement. My instructor has given me exercises to do during the week to help build up my endurance, balance, and leg muscles. What I never knew was that dancing really hits most of your core muscles as well so my stomach muscles are nice and solid as well. My posture has improved as well from dancing, it seems to be working for me.Maggie Quote Link to comment Share on other sites More sharing options...
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