I'm embarrassed to be posting so many threads about orthostatic intolerance but have just been diagnosed, am trying to understand it and find out how best to manage it, and there are lots of interesting questions that I thought best kept separate to be of most help to most people!
Anyway, I've just read all of Elisabeth Rybak's fascinating blog about following Dr Benjamin Levine's three-month POTS/OI programme. She's about halfway through and improving. You can read the whole thing if you click on the green "2010" in the righthand sidebar just under "Blog archive" (hi Elisabeth, thanks again for posting on my other thread!). Here's the background to her blog.
Dr Levine is a cardiologist with a special interest in OI, including as seen in astronauts when they return from space (!). He has devised a treatment protocol for it consisting of a training programme involving recumbent exercising in the gym within certain heart rate limits, weight training, diet (including extra salt) and other non-drug interventions that aim to recondition the body. He appears to be getting good results and will be publishing a paper on it this summer, detailing his protocol (to a certain extent at least; not sure if it will be enough for others to follow it).
Elisabeth has POTS/OI but not CFS, as I understand it (please correct me if I'm wrong, Elisabeth!) and I wondered whether the programme would be suitable or dangerous for those of us with both. The conditions overlap in many but are not the same. Dr Levine's unit will send your doctor the treatment protocol if you sign up to it but I'd be reluctant to raise the question of exercise with my doctor without first feeling confident that it would be OK for people with CFS.
The key difference from other exercise protocols (which I would agree are generally risky and possibly dangerous before anyone lays into me about GET!) is that these are done while sitting (recumbent bikes, rowing machines) and within a heart rate range appropriate for people with OI. Despite his OI patients also suffering from exercise intolerance and being quite severely disabled, many seem to be getting improvement.
However, having read Elisabeth's description of it, the protocol sounds terrifyingly intense and I would be extremely worried about relapsing. Her first session was, I think, 50 minutes of exercise on a recumbent bike or rowing machine including a 10-min warm up and 10-min cool down, all "within protocol-specified ranges". In some of the later sessions she was too tired to move from one machine to the other and for several weeks couldn't walk upright to the changing rooms afterwards! I wouldn't dare do any of that with ME/CFS unless others had gone there before me and lived to tell the tale, I'm afraid!
Does anyone have any knowledge/thoughts on this for people with CFS as well as POTS/OI? I realise that Elisabeth isn't allowed to be specific about the protocol prior to publication of Dr Levine's paper, which I respect.
Cort, do you think there's scope for an interview with Dr Levine on the potential or otherwise of this treatment for people with CFS who also have OI/POTS?
Very much looking forward to hearing everyone's views...
Anyway, I've just read all of Elisabeth Rybak's fascinating blog about following Dr Benjamin Levine's three-month POTS/OI programme. She's about halfway through and improving. You can read the whole thing if you click on the green "2010" in the righthand sidebar just under "Blog archive" (hi Elisabeth, thanks again for posting on my other thread!). Here's the background to her blog.
Dr Levine is a cardiologist with a special interest in OI, including as seen in astronauts when they return from space (!). He has devised a treatment protocol for it consisting of a training programme involving recumbent exercising in the gym within certain heart rate limits, weight training, diet (including extra salt) and other non-drug interventions that aim to recondition the body. He appears to be getting good results and will be publishing a paper on it this summer, detailing his protocol (to a certain extent at least; not sure if it will be enough for others to follow it).
Elisabeth has POTS/OI but not CFS, as I understand it (please correct me if I'm wrong, Elisabeth!) and I wondered whether the programme would be suitable or dangerous for those of us with both. The conditions overlap in many but are not the same. Dr Levine's unit will send your doctor the treatment protocol if you sign up to it but I'd be reluctant to raise the question of exercise with my doctor without first feeling confident that it would be OK for people with CFS.
The key difference from other exercise protocols (which I would agree are generally risky and possibly dangerous before anyone lays into me about GET!) is that these are done while sitting (recumbent bikes, rowing machines) and within a heart rate range appropriate for people with OI. Despite his OI patients also suffering from exercise intolerance and being quite severely disabled, many seem to be getting improvement.
However, having read Elisabeth's description of it, the protocol sounds terrifyingly intense and I would be extremely worried about relapsing. Her first session was, I think, 50 minutes of exercise on a recumbent bike or rowing machine including a 10-min warm up and 10-min cool down, all "within protocol-specified ranges". In some of the later sessions she was too tired to move from one machine to the other and for several weeks couldn't walk upright to the changing rooms afterwards! I wouldn't dare do any of that with ME/CFS unless others had gone there before me and lived to tell the tale, I'm afraid!
Does anyone have any knowledge/thoughts on this for people with CFS as well as POTS/OI? I realise that Elisabeth isn't allowed to be specific about the protocol prior to publication of Dr Levine's paper, which I respect.
Cort, do you think there's scope for an interview with Dr Levine on the potential or otherwise of this treatment for people with CFS who also have OI/POTS?
Very much looking forward to hearing everyone's views...