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

Heads Up or Heads Down to treat Orthostatic Intolerance

In cruising various POTS and OI discussion boards I sometimes come across posts by people who advocate sleeping with the head down to alleviate symptoms of orthostatic intolerance.  What is the answer to the debate as to whether it is better to sleep with our feet in the air or with our body elevated heads up?

I think whatever treatment we choose in our quest to recover/feel better from POTS or OI should be evidence-based where possible. 

There is so much speculation on what works and what doesn't that it makes it very difficult for a patient to decide...particularly when their own doctors engage in speculation. 

Thankfully there seem to be more and more clinical studies being done to help us out. Regarding the raising the foot or head of bed- I have found one clinical study proving the effects of raising the head of the bed. The report is entitled "Physiological effects of sleeping with the head of the bed elevated 18 in. in young healthy volunteers"

As for raising the foot of the bed - that has actually been used to induce orthostatic intolerance in patients for studies out of Texas. My speculation: It appears that raising the feet above the head is an emergency measure to be taken when someone has fainted but not to be used long term as it can can exacerbate OI.

Here are a couple of clinical studies regarding inducing othostatic intolerance in study patients through -6 degree negative tilt (head down, feet up) bed rest.

Orthostatic intolerance in 6 degrees head-down tilt and lower body negative pressure loading.

Cardiac Atrophy After Bed-Rest Deconditioning

What these studies show is after patients lie head down for a given period you can give them orthostatic intolerance and that the stroke volume of the heart upon standing is reduced after tilt-down rest. 

Not good! I would suggest that anyone currently sleeping with head down may be worsening their symptoms.

Air Travel and Postural Orthostatic Tachycardia

I recently received an email from a concerned mom.  It had a really great question about whether flying will cause problems in people with orthostatic intolerance or postural orthostatic tachycardia.

Here are my thoughts on air travel for those with "Spaceman's Disease"

Commercial airlines are required to pressurize their cabins to the point as close to sea-level as possible.  I believe the standard altitude for pressurization is 6,900 ft which is 350 ft below Mexico City's altitude.  Most people get symptoms of hypoxia or altitude sickness etc at around 8,500ft.  

There is a slightly reduced oxygen level during the flight but probably not something that will acerbate symptoms of POTS or OI.  However, the FAA advises that people who have heart or lung conditions or who have had recent surgery should take precautions. 

The air in a plane can sometimes have humidity levels below 20% which is very dehydrating.  If you are going to travel by air and you have POTS or OI then I recommend you DON'T rely on the airlines to keep you hydrated and fed. Those thimbles of water and tiny packages of weird pretzel-like snacks just won't do the trick.  Bring on board plenty of water (purchased after security) and nutritious snacks from home to keep in your carry-on such as salted almonds, celery sticks and "squeaky" cheese

Weightlessness, of course, is a very different experience from high-altitude as it involved the absence of gravity (weightlessness, as we all know, can cause orthostatic intolerance).

I have flown quite a bit while symptomatic including travelling while in a wheelchair and have not noticed a change in symptoms during or after flights.  

Hovering on the Edge of Wellness

A fitness lifestyle study conducted in 1981 examined the outcomes of two groups of overweight children; some who participated in a fitness aerobic program  and some who incorporated more active play into their lifestyle.  The results showed the fitness program group and the lifestyle group both lost weight during the 17 month study but the fitness program group measured better progress in cardiovascular endurance and recovery.  However, during the maintenance and follow-up period the lifestyle group were more likely to continue their fitness progress than the group on the fitness program.

This is only one of many studies examining the effects of positive lifestyle changes on our health vs prescriptive changes such as fitness programs, medications and surgical intervention.  The majority of the studies I have looked at all seem to suggest the same thing: positive lifestyle changes lead to a definite increase in long-term health and wellness.

As someone with POTS and OI, what do I take from that information?  Perhaps I really can't afford to be anything other than vigilant when it comes to choices I make about what I eat, activities I participate in, the amount of stress I allow into my life, assigning priorities for my time.

Here I am, almost at the end of the 9 weeks of Dr. Levine's exercise protocol and' I feel tremendously better but not completely better.  I am hovering on the edge of wellness...I can feel it...imagine it...but I can't quite fall into it.

What will happen if I don't adopt the right lifestyle changes will I always be hovering on the edge or will I regress?  There is so little research into what lifestyle changes really do affect positive changes in people with POTS how do I know my choices will be the right ones?

So far this is what I believe: 1) regular exercise is something I MUST continue in order to keep upright and out of a wheelchair  2)  healthy foods make me feel stronger 3) stress makes me feel worse  4) maintaining a healthy weight makes me feel better about myself.

I will continue to follow positive lifestyle changes and I hope and pray that someday soon they will allow me to fall off the edge into wellness.