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

Woman "Reclaims her Life" from POTS!

Looking for further evidence that controlled exercise can alleviate symptoms of POTS and OI?  Check out this video Dr. Levine kindly forwarded to me of one of his patients who achieved wonderful results with the protocol.

This protocol may not work for everybody but BY GOLLY it may be worth a try.  Look and listen to this very articulate woman as she recounts her experience:

Orthostatic Intolerance and Chronic Fatigue Syndrome (CFS)

Anyone newly diagnosed with POTS, OI or CFS is totally entitled to feel confused about the causes and interconnection between the three conditions.

In fact, there are enumerable hypoptheses on what causes what. One interesting study is entitled "The Importance of Orthostatic Intolerance in the Chronic Fatigue Syndrome" which appeared in the American Journal of the Medical Sciences by Schondorf and Freeman.  (Dr. Schondorf MD is a totally cool autonomic specialist working out of Montreal)

Since Dr. Levine's protocol is, so far, the only treatment that offers such dramatic improvement to POTS and OI patients wouldn't it be great to look at whether the same results are achieved with people who have POTS and Chronic Fatigue Syndrome? Or how about investigating the results in people who have OI and Chronic Fatigue?

Perhaps YOU have been diagnosed with POTS and/or OI and CFS. Would you be willing to try the protocol?  Hmmmm....

POTS and Menstruation

If you have POTS or OI (and you're female :-)  you probably have noticed that around the time of menstruation your symptoms get worse.  In May 2009 an interesting study was publsihed which looked at the link between a woman's monthly cycle and postural orthostatic tachycardia.

Wordily entitled "Menstrual cycle affects renal-adrenal and hemodynamic responses during prolonged standing in the postural orthostatic tachycardia syndrome." by Fu, VanGundy, Shibata, Auchus, Williams and Levine, the study examines why we may feel better in the Mid-Luteal Phase vs the Follicular phase of our cycle.  If you are horrified to think you had a follicular phase and didn't even know it, here is a diagram which should explain why you need not be alarmed.

Speaking personally, if I am symptomatic with POTS or OI going into my "Follicular" phase, I will certainly have difficulty remaining upright until the "Luteal" phase begins.

How was the Study Conducted?
Ten women with POTS and 11 control subjects ate a "constant" diet for 3 days prior to the trial. ( I am not what "constant" means...but it evokes an image of 21 women continuously grazing at a Weight Watchers buffet).  Their cardiac output, stroke volume, blood pressure, heart rate and peripheral resistance were measured along with their renal-adrenal hormones during periods of 2 hrs standing and while laying down.

Deciphering the Results
What the report on the study appears to be saying is that plasma renin activity was lower in the follicular phase versus the mid-luteal in both groups but even lower in the POTS subjects!  Both groups also felt like they were going to pass out more in the follicular phase.

The higher levels of progesterone and estrogen during the MLP phase  are associated with the production of more renal-adrenal hormones which improves blood volume...

...OR the more renal-adrenal hormone activity EQUALS less POTS and OI symptoms! Hooray!

Does this translate into practical guidance for managing POTS or OI?
Maybe.  There are theories out there which offer tips on how avoid activities which, over time, suppress the renal-adrenal hormone activity.  Consumption of caffeine, alcohol and sugar are said to be negative influences as well as unhealthy eating and crummy lifestyle choices.  Stress is also suggested as a negative.  Sounds like practical sense to me.

Exercise and POTS and OI

A couple of months ago I posted the report prepared by Dr. Levine et al which described the study and results of their work with POTS patients.  Since Dr. Levine's team first study they have expanded their investigations into a second study which includes approximately 300 patients.

What I find mystifying: 
1. There are people with POTS who read the study and immediately dismiss the findings because of the small number of patients involved.
My response: Regardless of the number of patients, the results for those few were significant.  Since there are very few reports examining treatments for this condition, wouldn't a study like this, published in the American Journal of Cardiology, give some hope to those who suffer?  I surely hope that my blog posts also serve as additional information to help people make an informed choice about their own treatment.

2. There are POTS sufferers who believe that exercise is contraindicated in people with POTS or OI.
My response:  If there is an underlying defect of the body then perhaps.  If the diagnosis is just POTS or OI then I have yet to see ANY EVIDENCE that exercise is contraindicated.

Also, not all types of exercise have the same effect on the body and some may make the symptoms of POTS and OI worse. The exercises, as indicated in the Levine Protocol, require that the cardiovascular routines are done in a recumbent position and are performed within specific heart rate zones.  As the body becomes stronger and adapts to the cardiovascular challenges, the exercises can be performed upright.  As a long time POTS and OI sufferer I know what I can and what I can't do.  If I am symptomatic and try to do cardio on a treadmill or elyptical (upright) then I will definitely suffer from exercise intolerance.

3. Many POTS and OI sufferers assume that medications prescribed by doctors to treat POTS or OI such as midodrine or florinef are safe and/or effective even in the long term.
My response: There are scant studies on the effects of drugs to treat POTS or OI.  One study for Midodrine (Kapoor 2003,) which is cited frequently, was with 16 patients I believe.  All drugs used to treat POTS and OI have side-effects.  All of them.

My personal choice for treatment is diet (lotsa salt), exercise and healthy living as I believe the unknown, long term effects of drugs could be harmful.  My personal choice is to help and support my own body's ability to live with this as apposed to interfering with it.

My personal choice aside, please don't discount exercise as a potential treatment for Postural Orthostatic Tachycardia Syndrome or Orthostatic Intolerance!