ramakentesh Posted February 26, 2013 Report Share Posted February 26, 2013 Here a poll on this just for interest's sake: Quote Link to comment Share on other sites More sharing options...
Relax86 Posted February 26, 2013 Report Share Posted February 26, 2013 Once medically cleared by the cardiologist I was supported to do what I felt was right. And it was suggested pushing (for my case) was fine and could only help. But yes, at times I would struggle after exercise for a day or more; usually resulting in overall decrease in symptoms. Quote Link to comment Share on other sites More sharing options...
Aimes Posted February 26, 2013 Report Share Posted February 26, 2013 In my case, pushing exercise has always resulted in a crash. I'm so happy for others who have been helped with exercise protocols. I'm wondering if the success of these programs depends on the type of POTS or whether the onset was sudden, gradual, or always there. I've always had POTS. I've never been able to even jog a lap around a gym wiithout blacking out. I used to get so frustrated by this and I would start exercise programs in an attempt to push through. The outcome was never pretty! I find I do best if I take it slow and easy. I'm currently doing yoga which is working great. I'm gaining muscle tone and doing it in a nice, calm manner. I try to group the poses together (start with floor poses, work up to standing poses, and finish with more floor poses). This eliminates the up and down that can be so hard on us with OI. I also have to make sure to take it easy, even when I'm feeling good. Some days I feel really energetic so I decide to do more exercise. This usually results in me feeling terrible after the fact and I go backwards! I should mention that I did very well with weight training in college. I can't jog a lap, but I can lift weights for hours! Ha ha! But now with two little ones at home I can't get to the gym! I feel ok about it, though, as chasing two little girls around the house is exercise enough! Quote Link to comment Share on other sites More sharing options...
Angela Posted February 26, 2013 Report Share Posted February 26, 2013 aimes, yeah i hear you I have a 3 1/2 yr old son and that's hard keeping up with. He's always wanting to play ninja, power ranger, when he was 2 it was ring around the rosy and I couldn't figure out why that made me feel so sick! I love yoga, i did it prepots dx and it gave me more energy and keeps me toned. plus you can do floor exercises if you are dizzy with the up and down positions, but sun salutations feel freakin awesome when I can do them. guys think it is sissy stuff but there are some great dvd's you can get and the dudes are super muscular/toned from yoga! Quote Link to comment Share on other sites More sharing options...
Batik Posted February 26, 2013 Report Share Posted February 26, 2013 A lot of us here have ME/CFS, and that causes exercise intolerance. That will partially explain why some of us do better on exercise and some do worse.If you'd allowed us to tick more than one option for the last question, I would have, as I've encountered various attitudes from medical professionals. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted February 26, 2013 Report Share Posted February 26, 2013 I ended up doing a very modified version of Ben Levine's protocol. It has been almost a year. It has been very difficult but ultimately the most important thing I have done to have improvement in my daily functioning. I'll hit my year mark in the middle of March and plan a post about that but basically I've learned:- very slow steady progress is helpful. (this is hard for a former type A personality)- starting recumbent and staying recumbent for a long time is helpful- building to a highly strenuous level is helpful, but learn how to recognize when it is too strenuous - always watch your HR and aim to keep it in range.- starting w cardiac rehab or an experienced exercise trainer is very helpful- know the difference between when it is time to stay home in bed and when to force yourself to go.- keep it up (3x a week min) is really helpful- drink 4-6 oz every 10 mins or so- both aerobic and strength building are important Quote Link to comment Share on other sites More sharing options...
seattle chris Posted February 27, 2013 Report Share Posted February 27, 2013 Does anyone know where to obtain a copy of the program? Or is it tailored to each person, necessitating a call to Dr. Levine? Quote Link to comment Share on other sites More sharing options...
Angela Posted February 27, 2013 Report Share Posted February 27, 2013 so kelly saved by grace happyu that u r doing better. are you hyper? do you flare and the go thru un-relapses of almost well being so to speak? Quote Link to comment Share on other sites More sharing options...
AussieOI Posted February 27, 2013 Report Share Posted February 27, 2013 What heartrate range does Dr Levine recommend? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 27, 2013 Author Report Share Posted February 27, 2013 I do Angela Quote Link to comment Share on other sites More sharing options...
Angela Posted February 27, 2013 Report Share Posted February 27, 2013 me too Rama. That's why I always question when people say they have improved, I am glad they are feeling better but I do notice many have relapses down the road as I have had although I am so not trying to put a negative spin here. I have had times of improvement and then bam it's back for no rythym or reason I can figure. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted February 27, 2013 Report Share Posted February 27, 2013 I would also love to know the target heart rate he recommends Quote Link to comment Share on other sites More sharing options...
alexhunterus Posted February 28, 2013 Report Share Posted February 28, 2013 I'm 3 weeks in on the Levine protocol, so too early to tell yet. I was given the program by my cardiologist who set my heart rate goals. I think it would be different for different people. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 28, 2013 Author Report Share Posted February 28, 2013 My prediction is that since recent work suggested that the hemodynamics of exercise in POTS are unlike deconditioning, exercise may improve the condition but may not prevent relapses further down the track. has been my experience over the last ten years. And at times ive been super fit (running 5kms three times a week, swimming 1km two times a week with weights in between)My contention is that exercise just makes you tolerate exercise better.But this is the problem - clearly POTS is a set of disorders with standing tachycardia and dizziness - otherwise they may be entirely different.So a study on a small cohort with deconditioning may have little application to the wider POTS community.Not saying exercise doesnt help and some claim it profoundly benefits them. But that doesnt prove generally that it will in all cases.Deconditioning was assumed from low stroke volume which also occurs in neuropathic POTS and in NET defiency. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted March 1, 2013 Report Share Posted March 1, 2013 I believe emphatically that I was a POTs candidate from being significantly anemic followed by an autoimmune flare/dysautonomia (still trying to decide) followed by a 4 day hospital stay with a ridiculous amount of bloodwork. Followed by discharge; feeling worse and continued lab testing - weekly - wildly looking for answers. I didn't start to get better until I stopped the blood work; a decision I made after having a test that showed low blood volume. I don't think my body rebuilds/replenishes blood quickly. I currently do not have low hemoglobin or hematocrit but I'm always on the lowest end of normal and that's with 2 iron pills/day, beets daily and liver every 2 weeks. I agree with Rama in that exercise does make you tolerate exercise better; but my body still flares when that's what it wants to do. Funny thing is that I call myself 85-90% improved, and I am better, but each day I can still list easily 5-10 symptoms that I've learned to live with. It's just nuts. This week I had a bad response to a (first time eaten) salad dressing - immediate fatigue, followed by adrenaline surges, followed by a 3 day migraine. That was not normal Tracy pre POTs, or autoimmune or dysautonomia or complement disorder or whatever this is. Quote Link to comment Share on other sites More sharing options...
Racer Posted March 1, 2013 Report Share Posted March 1, 2013 What heartrate range does Dr Levine recommend? While I dont know much about the Dr Levine program, in general target ranges would have to be tailored to your individual needs. Everyone is different, with different resting and max HR, along with differnt threshold levels, and different base conditioning levels. Quote Link to comment Share on other sites More sharing options...
potsticker63 Posted October 14, 2014 Report Share Posted October 14, 2014 from my personal experience, the hardest exercises to do (AND the most rewarding long term) are exercises that combine cardio workout with resistance. like for example, a rower or a recumbent bike on a high level of resistance. if i run a few miles every day, but don't add resistance, i just don't get the same rewards over time. Quote Link to comment Share on other sites More sharing options...
potsticker63 Posted October 14, 2014 Report Share Posted October 14, 2014 also, running with an incline while shadow boxing is a great one. Quote Link to comment Share on other sites More sharing options...
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