Dr Benjamin Levine's POTS exercise/diet programme - what about CFS?

[potsrecovery]

Orthostatic Intolerance, POTS and CFS

For those of you who may have seen my blog on Dr. Levine's Exercise protocol for POTS:

I was, in fact, diagnosed with Epsteinn Barr and CFS prior to being diagnosed with POTS and OI. So why do I ignore the CFS? I don't ignore the diagnosis I just think they conditions are inextricably linked and treating the POTS/OI is more relevant to my recovery....in my case. and...I don't believe it is coincidence that over 40% of CFS patients also suffer from symptoms of OI.

That said I know what has helped me cope with EB, CFS, POTS and OI over 25 years and exercise, fluid/salt are central to my feeling better.

Performing exercises when you are exercise intolerant requires an adherence to training within specific heart rate zones and doing it sitting down so as not to overtax your system. It is hard, really hard but, over time, persistence yields results. As a researcher on Dr. Levine's team said "you aren't going to die". I remember that when I feel like I am going to die on the recumbent bike after 15 minutes of keeping my heart rate at 130bpm.

I encourage ANYONE with CFS and OI symptoms to investigate the body of research/evidence available suggesting that exercise is emerging as the most important recovery treatment for these symptoms. My blog can be found at http://potsrecovery.com

 

[Lesley]

Liz, Thanks for posting. We've been wondering if the program would work for people with CFS and POTS, and not only people with just POTS. I know from my experiences using a heart rate monitor for pacing that it makes a big difference. And my daughter and I can exercise more on a recumbent bike than if we do something like walking. I am anxious to see the paper to understand the program better. Do you know when the paper will be published?

 

[Cort]

Ha! yes, two years later. I just saw this....yes, definitely with regards Dr. Levine. I found this by looking up Dr. Newton's HOT orthostatic intolerance treatment.....interesting stuff! Am just learning about it now..

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...

 

[Sallysblooms]

A lot of POTSIES are not big fans of his....Calling POTS, "Grinch sydrome." Bizarre how a doctor would say that .

 

[taniaaust1]

And if I were to train using the work-interval system (anaerobic work/long rest, repeated), would that increase the length of time that my anaerobic system would be dominant in lengthier activity? How much time is is possible to extend it, given that it seems to be pretty much gone in 5 mins? Or is it "just" for strength training (it's important for OI to strengthen your core and large muscles to prevent blood pooling)? In general, what would anaerobic training get me in everyday CFS/OI life? More strength? More physical stamina? More time vertical? More cognitive stamina?

I have played around quite a bit with that kind of stop/start kind of exercise in the past (based on what Im okay to do with keeping my symptoms to an okay level which dont flare them up more). I didnt use a monitor but just how my symptoms go to work out what times Im okay for.

For me.. it was 45 seconds of active physicial exercise (run/jog) then 60-90 seconds of rest (which I did via just then slow walking). I could do this over and over for 2 hrs straight without a crash, as long as I stayed very cool (the moment I warm up in anyway, the POTS symptoms would flare making it so I couldn then continue). I think the 45 seconds of running each time.. was enough to get the blood good to my head cause I was very bad with POTS when it came to standing still and would just collapse. If I did just 5 seconds over the 45 seconds when I first started doing exercising.. my body would really stuff up (major headspins, shaking, dizziness, muscle pain and like paralyses of my muscles).

*Note..I could do that walk/run thing but I couldnt just do that in walking alone as that would make me sick... I needed the little run in it to be able to keep going. Its like standing.. very bad with POTS but with moving about more.. a bit better on ones head. The OI with a quick run.. helped stop the POTS head from walking too long (40 mins straight walking would of collapsed me.. yet I could do this for 2 hrs)... and I guess the slow walk after 50 seconds of that.. helped keep my heart rate down so hence helped stop the postexertional stuff???

After thou 6-8 weeks of doing it daily.. I could do an extra 5 seconds or so (at times I could then run up to 55 seconds but I still couldnt consistantly do it with the rests). I cant now remember if my rest time generally got shorter after the couple of months exercise.. It may of.. as I remember sometimes doing a 1 min rest each time..but I do remember I couldnt keep that up for long at all at that rate, so still had to do more resting then activity .. I thinky rest period went down to about 1min 20 seconds (so 10 seconds less resting per cycle) to about 50-55 second run.

Looking back.. it wasnt my fitness as such which seemed to increase by that 5 seconds (I didnt feel at all fitter or stronger) but maybe that which is being talked about being increased on this thread.

Looking back.. was it worth it? I personally dont think so..6-8 weeks of exercising for that 2 hrs per day doing the run/rest stuff, it didnt fix any of my symptom, I didnt feell any stronger at all. 2 months daily exercise for just 5 seconds improvement in my short term stamina.... At that rate it would take years of exercise.... soo much time to build onself up in that way. I still had no ability to go into aerobic exercise functioning.

At the time I was doing this I was watching The Biggest Looser.. my exercise improvement was hardly noticable at all.. sigh.. for me seconds improvement and in this same amount of time, they went from hardly able to walk to running 10 kms.. and here i was only able to run 55 seconds!!! The time I put in to what I then gained.. was utterly disheartening. All this two month of exercise did, was show me just how badly abnormal my body is.

The ratios many of the ME/CFS specialists say for exercise activity then rest.. are just very wrong to my case and would make me much worst. eg I couldnt do 5 mins and then 5 mins rest cycles some well known ME experts recommend. With lower intensity exercise eg doing housework for 5mins then resting 10 mins.. if I do that over and over.. in just over 2 hrs Im getting very ME sick and will end up then often going to bed feverish (not just feel feverish, I actually do then sometimes get an actual fever) and sick and be unweller the next day.

I used to use my favourite tv shows at night to try to do pacing too.. and for doing housework in commerical breaks and laying on the lounge when the tv show is back on.. that ends up creeping up on me after a time and I get sick due to its not enough rest to the activity. 2 hrs of that.. and Im then PMed out. (I avoid PM by not posing such harsh rules onto myself.. I could do that ratio for about an hour but then I need 5-6 hours rest before I can do something at that ratio again)

But for some reason I could more easier manage.. 50 seconds run.. to 1 min 30 second rest cycles for that time and not get sick from that. So shorter exercise periods with longer then 1:1 ratitos eg 1:2 (exercise:rest) may be better.

I want to get one of those heart monitors one can wear when exercising soon... to see where my heart fits with all this stuff... When I do.. I'll try to judge things using symptoms and time before being affected as a guide to ry to work out what heart rates im okay with

 

[Sasha]

Ha! yes, two years later. I just saw this....yes, definitely with regards Dr. Levine. I found this by looking up Dr. Newton's HOT orthostatic intolerance treatment.....interesting stuff! Am just learning about it now..

Hi Cort, welcome to the thread! I guess I should have PM'ed you!

I think there are some really interesting questions here. OI is a problem for the majority of PWME and yet ME, properly defined, has PEM as the cardinal symptom and for many of us, it's so major as to make the sort of programme that Elisabeth undertook out of the question. I would like to know whether Dr Levine is looking out for PEM as a CFS symptom, if he's conscious of CFS as an important separate issue from OI.

Tania raises an important point about the magnitude of any gain from OI training. The gain in function in the Newton HOT study was miniscule, as I recall.

 

[BEG]

Hi Tania and Sallysblooms,

We just keep meeting up on these POTS threads. I know I can't get enough information about it. When I worked very briefly with a physical therapist for my knees, he pointed out the importance of strengthening thigh muscles so the blood will pump harder to the heart. I learned a CFS-friendly excercise. Stand about a foot away from your kitchen counter and put a kitchen stool behind you as if you would be sitting on it. Put your hands on the counter for balance and do a mini squat aiming to sit on the stool but not actually sitting on it. Stand upright and keep doing the squats within your limits.

 

[Sallysblooms]

Yes, getting the legs strong is important. I do exer. bands, I use a peddler bike, and toe raises, and for the core, I lean over my kitchen counter like a plank exer. It is all important. I could not do any of this until I was on my supplements for POTS for several years. Before that, I could not move. The supplements heal my nerves, THEN exer. can happen.


I just know POTSIES are not fond of the way he said they had small hearts, our hearts are usually fine. Cardios find they are reg. size. And even if they did, calling it the Grinch Syndrome is awful. It was a big deal when it happened and many letters were written to the TV program to stop it from being talked about. That was fantastic. I am on several POTSY sites.

 

[taniaaust1]

I tried the leg strengthing stuff early in the piece when I first found out I had POTS (a doctor had me doing leg exercises and strengthening them0... unfortunately in my case it didnt help the POTS at all.

 

[xks201]

I'm a weight lifter and take salt and florinef and nothing helps except desmopressin. Measure urine output and fluid input and compare the two and if output exceeds input definitely get a water deprivation test done by an endocrinologist to rule out DI or partial diabetes insipidus. This exercise program sounds like a bunch of bull. It might work for people who really don't have a hormone problem like astronaughts.