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

Day 47

Holy Moly!  ..this whole week has been a real struggle.  I am able to do my exercises as prescribed which is a good thing.  However, my brain fog is worse and my blood pressure seems much more unstable than last week.  I attribute this worsening of symptoms to my monthly cycle.  The variation in womanly hormones is what Tiffany from Dr. Levine's research team said could exacerbate symptoms.  (I think most women with POTS or OI know this already but it's still nice to have someone else say it) Next week should be a better week and I have GOT to be in better shape for St. Patrick's Day.  In the meantime...

...the bed is my best friend!

"Spaceman's Disease" way cooler name than POTS

There are a myriad of centers investigating orthostatic intolerance and its various flavors (see previous post) but one area of research is particularly cool - spaceflight and its effect on the autonomic nervous system.

Dr. Robertson and his gang at the Vanderbilt Center is one team that has done extensive investigations into the cause of orthostatic intolerance in astronauts post-spaceflight.  Their findings have shown that OI can be caused by elevated levels of neurotransmitters, particularly norepinephrine which cause the heart rate to go up and blood vessels to constrict at "innapropriate" times causing a reduction of blood flow to the brain.   Reduced blood volume, such as what astronauts experience during spaceflight, can increase the level of neurotransmitters in the body because low blood volume makes the sympathetic nerves release more norepinephrine.

low blood volume = increase neurotransmitters = increase HR and decrease cerebral blood flow = orthostatic intolerance

While the gang at the Vanderbilt Center are now hunting down the causes of orthostatic intolerance in gravity huggers like us, Dr. B. Levine and his team in Texas are working on treatments which train the body's systems to better compensate for the effect of orthostatic intolerance.  Dr. Levine was (is?) the Director of the Cardiovascular Alterations Team at the National Space Biomedical Research Institute.  In 2007, he performed a bed-rest study (perfect for some first year college students like my son) to replicate the effects of weightlessness on the body.  During the five week snooze-fest, Dr. Levine had some of the research subjects perform an exercise routine designed to maintain "cardiac size and function" and prevent deconditioning during bed rest.  

According to Dr. Levine the results were "satisfying".  That study was the precursor to Dr. Levine's POTS Treatment Protocol yours truly is benefiting from today.

Sensitivity to drugs for people with Postural Orthostatic Tachycardia and Orthostatic Intolerance

Listening to Our Bodies
For those of you who have been following this blog you will probably already know that I have been experiencing the symptoms of POTS and OI for 20+ years.   When you have a chronic condition, over time you learn about what your body will and will not tolerate in terms of medication and in foods.  I don't know if my personal sensitivities have anything to do with  POTS and OI.  However, I suspect that they do.

Drugs and food I avoid, particularly when I am in an OI cycle:
  • cold & flu medicines
  • birth control pills
  • caffeine
  • diet pills (stoopid - I tried these once which was enough to know I couldn't take them)
  • codeine
  • ginseng
  • anesthetics
  • epinephrine
  • benzocaine - severe reaction
  • ampicillin - severe reaction
Generally, I just avoid drugs and look for alternatives.  

In doing research on OI and POTS I have found that there are a number of different flavors of the conditions such as low flow POTS, normal flow POTS, beta-receptor supersensitivity, alpha-receptor dysfunction etc.  It appears from the research studies that each "flavor" determines a patient's tolerance for certain drugs.
  1. Wouldn't it be nice if there were standard, doctor administered tests to determine which flavor of condition we had?
  2. Wouldn't it be nice if there was a patient handbook on what drugs to avoid and why?

Day 42

CRASH!  Today my bp is not stable at all.  In fact, I am having difficulty walking around.  When my blood pressure is unstable, if I have to walk then I hunch over like Quasimodo.  Not a pretty site and embarrassing to do if in public.

I am sure this setback is temporary and is caused by my womanly monthly cycle.  Grrrrrr!

Soldier On!