For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Advice to John on Dr. Levine's Exercise Program

The exercise program I have been on is very specific to treating orthostatic intolerance; developed by Dr. B. Levine who has performed significant research on POTS,OI and physiology.  The program lasts for 3 months and has very specific exercises for each day with some days off for resting.  Aerobic exercises must be done with a heart rate monitor so that the patient can ensure that their heart rate remains within the specified range for a specific period of time as prescribed by the exercise program...this is the 1ST KEY FACTOR to the success of the program.  The exercise program forbids training while upright or standing until the end of the 3 months.  All exercises are recumbent either using a recumbent cycle, swimming or, considered best of all, a rowing machine...this is the 2ND KEY FACTOR.

As far as I understand, there was an initial study with a small group of people with POTS/OI who performed the 3 months of exercise at Dr. Levine's labs.  I was told by one of his researchers that over 85% of participants showed dramatic recovery.  The study was then expanded to include 300 patients through-out North America (I am one).  Dr. Levine's research will be published in the next couple of months I believe.

If you are not experiencing the recovery you expect then I suggest you might want to try following the heart rate method as explained in my "exercise" page on the blog.  Also, if your diagnosis is confined to OI and/or POTS then you may want to consider weaning off the florinef and midodrine.  Participants in Dr. Levine's program must be off all meds.  When I started I was barely out of a wheelchair.  Dr. Levine's research as well as others seem to show that the body can adapt to sustaining appropriate blood pressure/heart rate/blood volume/arterial pressure through this managed "orthostatic training" combined with fluids and increased sodium.  However, it appears that people with chronic OI (like myself) must change their lifestyle to accommodate the physical training and diet needs of their body forever.

For me, nutrition has been critical.  I too avoid caffeine but I'l be d*mmed if I give up a nice glass of borolo now and then!  

I eat nutritious foods, organic when I can, and use supplements such as Greens+ because of the iodine, I also take vitamin D, B2, calcium w/magnesium, Omega 3 and a multi-vitamin.

Going off the meds, I would think, could be a sticky problem for you.  On one hand they may inhibit your body's ability to adapt enough to recover but on the other hand your symptoms could dramatically worsen while you are weaning off them.  

Best of luck with this and if you do choose to change your regime please let me know what happens.