Dr Levine Exercise Program

[futurehope]

FWIW, I do not have "the program", but I "do my own thing". Some days, I wear my heart monitor. I do some exercises at home, then some at the gym. I do biking and treadmill and some weights. I noticed that my exercise heartrate has gone down over the last eight weeks. Yayy!!! I will keep this up as long as I can. Again, I do not think this is a cure. I think this is a way to "manage" the impact on my quality of life.

I plan on continuing my own thing until it is no longer feasible.

I was an exercise nut before, so for me, this is just being who I am.

[Babygirl1973]

Just food for thought- If we strengthen the muscles in our legs, they tighten when we stand hence decreasing the effect gravity has on our blood. Working out our lower body decreases the amount of pooling of blood, hence impacting the degree of our symptoms.

"Reconditioning of the patient with POTS is of paramount importance. The aim of reconditioning is to improve the strength of the legs and thereby increase the effectiveness of the skeletal muscles to pump and return blood to the heart. This is best accomplished by a combination of aerobic exercise and resistance (weight) training. Often, water exercises (such as swimming) are the most comfortable for the patient."

http://www.hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-by-dr-blair-grubb

See diagram for visual....

[jem15]

Thanks for letting us know Benny. Glad it's working for you:-) And ok, good to know, that you were managing not too bad with compression stockings before the protocol. Helps to know and put it in perspective. I'm actually just about to try a pair of thigh high compression stockings...then they want me to try midodrine first, before trying the protocol, so we'll see what happens...

Continue to keep us posted as you make your way through.

[firewatcher]

I asked my GP about this and gave him the full text of the study. He totally nixed this for me. He told me that my ANS testing results looked nothing like the study participants and that "bad things happen when you are put in motion." He was all for it if I would go see Dr. Levine and get a protocol specifically designed for me, but not the exercises in this study.

I must agree that the increase muscle tone in my core and legs from Pilates has helped, but my HR and BP are still all wonky.

[handmadebyemy]

Dr Levine and his exercise physiologist will tailor the program to each patient, they give you very specific heart rate zones based on the results of your stand test (which is required before getting approved for the study).

I wish I could give you more specifics about the exercises and schedule but I'm not allowed to. Hopefully Dr Levine will publish more info about it in the future.

[potsgirl]

Off topic, but so glad to see you back!

[ramakentesh]

It should be noted that Levine et al's theories about the cause of POTS are not widely accepted by other doctors.

[ramakentesh]

I was running 3kms a day in the midst of POTS. I did not notice any immediate benefit. But i was this time never deconditioned.

[radiohfan23]

I also was in training for a half marathon when symptoms began and was in very good shape leading up to it (I've been an athlete all my life). Although I do notice now that exercise (what i can tolerate - recumbent bike/rowing machine @ very light levels) does help but it's certainly far from a cure.

[ramakentesh]

Two problems I think mate - the first is that POTS isnt a single illness but a whole bunch of them - up to 8 different causal mechanisms. So what might help the majority might actually harm the minority and since the science behind why exercise helps is questionable it makes it hard to really establish why this is. Exercise generally helps me a bit - but it certainly didnt cure me in any way.

[Neshema1]

Sorry to revive an old topic but Im confused. I have low stroke volume bad bad bad pots, severe hypovolemia, was in excellent shape before pots, always fainted for unknown reasons to me, but had very low Bp. Ihave been worked up ad nauseam for pots and more (I have symptoms of msa). So, my heart is normal size, not small, as Levine claims and my EP recently mentioned he heard was cause of low stroke volume. I have had mris, pet scans, u name it. I am practically home bound. I have been approved for PT, but have no recumbent bike, and have developed this weird bone problem, the mito doc thinks may be characteristic of a mito. It's really messy. I want to get in shape and help myself and do anything to get better, but I don't want to get worse. I can't find levine's protocol online & do u know abt the heart size thing?

[Alan-pots-IST]

i was working out , bikeing runner all my when i got pots i was joging 3 to 4 miles a day and id walk 3 to 4 after my run.

Bikeing a lot that kind of thing.