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

Working with your doctor to find out if you have Postural Orthostatic Tachycardia Syndrome

You have become ill and your doctors are completely mystified as to what the condition could be.  You have seen your family doctor and maybe the cardiologist and neurologist too. Your symptoms may include:

  • dizziness upon standing
  • fainting or near-fainting episodes
  • chest pain
  • fatigue
  • rapid heart rate when standing
  • migraines
  • visual disturbances
  • brain fog
  • nerve pain
  • purple feet when standing
  • brain fog (did I say that twice?)
If this sounds familiar, you may indeed have Postural Orthostatic Tachycardia Syndrome or Orthostatic Intolerance.  Some medical papers report their are over 500,000 people suffering from these conditions in North America.  However, the conditions are not widely recognized by the medical community.  If you think you have POTS or OI here are two medical papers that may help you and your doctors figure out what is wrong.

The first paper is entitled "Autonomic Neuropathy" authored by Arbogast, Miles and Katirji. (thank you to EJ for bringing this to my attention.)  It discusses various conditions which may effect the autonomic nervous system, diagnostic procedures, differential diagnoses and treatments.  Often patients experiencing symptoms of POTS or OI are examined for autonomic dysfunction.

This paper can be found here:  http://emedicine.medscape.com/article/1173756-print

The second paper is simply called "Postural Tachycardia Syndrome (POTS)", authored by Low, Sandroni, Joyner and Shen.  This paper discusses POTS and OI specifically and describes the various flavours of the conditions, evaluation and diagnoses and management.
This paper can be found here: http://www.medscape.com/viewarticle/705183

To help your mystified doctors out, you may want to print out and bring along these papers to your next visit. They could save you a lot of unnecessary tests and grief.

EXCLUSIVE: Yellow Wiggle, Greg Page, agrees to Interview with POTSrecovery

Handing over the Yellow Wiggledom
to Sam Moran
You heard it here first folks! I have received an email from Greg Page and he has kindly agreed to share with us some of his story on living with orthostatic intolerance.

He has asked that I prepare a list of questions for him. Which I will. If you have any questions that you would like me to include please send me an email at liz@potsrecovery.com.

Greg Page left the popular kids' singing group, the Wiggles, November 30 of 2006 due to illness.  Subsequent to his departure it was found out that he suffered from Orthostatic Intolerance.  Like many of us with POTS or OI, the diagnosis wasn't straighforward:
"We don't know what's wrong with him - he's had a lot of fainting spells, he's had a lot of tests done to work it out," she told the newspaper's online edition. "I spoke to him this morning and he said 'Yes, I'm tired, but the doctors haven't put a name to it yet, they just don't know.'" Dianna O'Neill on Greg's illness as reported in the Daily Mail on Nov 27/06
Buy your very own
Yellow wiggle shirt!
I can certainly relate to someone whose fainting spells have mystified the medical community.  

I am not sure if Mr. Page realizes how helpful it is for people with this not-very-well-known condition to be able to refer to someone famous who also has the condition.  It somehow legitimizes the condition for some people, particularly the under 12 crowd.

Update on the Wiggle Challenge

At the kind suggestion of readers I have sent an email to Mr. Greg Page through his website.

I have asked if he would consider doing an interview for the blog.

Why do I feel like paparazzi?

The Yellow Wiggle Challenge

Since I first started writing about the Yellow Wiggle as being one of the most famous sufferers of Orthostatic Intolerance I have received many teasing remarks and have been the (wiggly) butt of many a joke.  A close family member even tried to do a school project entitled "the Yellow Wiggle Disease" but abandoned the project because it didn't sound serious enough.

I have decided show these people just how SERIOUS this condition is and that it is NO LAUGHING MATTER. I have decided to rise to the challenge of finding Greg Page, the original Yellow Wiggle and getting him to agree to being interviewed by yours truly on his experience with Orthostatic Intolerance and then post the interview on this blog.

Anyone with information as to his whereabouts is asked to please contact the author.

Master your Inner Couch Potato

I can think of no better candidate for a Couch Potato than a person with Postural Orthostatic Tachycardia Syndrome or Orthostatic Intolerance.
  1. Exercise can trigger unpleasant "exercise intolerance"symptoms such as extreme fatigue
  2. Walking and even standing can produce near-fainting or fainting episodes, rapid heart rate and nausea
  3. Holding your hands above your head can make you pass out - yup, it's happened to me
  4. It can be physiologically proven that lying in a La-Z-Boy recliner makes you feel better
  5. Everyone tells you to increase your salt - Bring on the All-Dressed Potato chips!!   
In my recent prowling around the various dysautonomia message boards and POTS sites I have noticed that there are a fair number of POTS and OI folks discussing exercise as a potential treatment.  What was suprising was that many people are arguing about the merits of exercise. 
"Intellectually I acknowledge the potential benefits of exercise but, quite frankly, I don't think its for me"
I can choose not to exercise because its too much work but I can't really argue about its merits.  If they had an exercise "pill" for example I would probably be trying to get on the drug trial list.  If I lived in the 1800s I would have purchased one of these medicated undergarments to "reduce the flesh".  Pills and rubber garments are far easier than exercise.  I wrestle with my tendencies all the time.

However, it is irrefutable, exercise is good for you.  There are innumerable studies which show that moderate exercise is beneficial unless you have some sort of disease that absolutely does not permit physical activity like fragile-bones disease.

I have chronic POTS and OI due to some mysterious cause that the doctors may never discover.  One of the ONLY treatments research has shown to dramatically improve the symptoms of patients with POTS is exercise.  So I exercise regularly and eat a fairly decent, healthy diet with extra salt and fluids.  I expect that I will continue to experience relapses due to unknown reasons but I also know that I will be stronger and more able to cope with any relapses if I keep exercising and maintain a healthy weight.

There are times, like today, when I want to sit on the couch and eat a whole bag of Lays Potato chips with dip.  There are times when I want a giant fudgey.  However, no amount of fudgies in the world are worth my health and being able to live a reasonably full life. So I get off the couch and put away the bag of Lay's until next week, forget about the fudgey and I go exercise.

My 1972 Parisienne Couch Potato Car


My very first car was a pale yellow 1972 Parisienne which I purchased for a grand total of $300.  The car was lying in a farmer's field for a couple of years prior to the transfer of ownership.  It had been lying there so long, in fact, a tree was growing out of the front of the radiator grill.  The horn worked but sounded like an old man with smoker's cough.  The engine worked too...most of the time.  It was so plugged with (gunk?) that it took about 2 minutes from a standing start to get to 20mph.  The brakes weren't bad either but it was best to finish your take-out coffee before you needed to stop. 

You would expect a few troubles with a car that been lying around in a farmer's field for 2 years, right?  With regular oil changes, clean gasoline and some new spark plugs the car's drive improved.  It never lost its smoker's cough but it lasted me for another 3 years until I sold it for a modest profit.

When you have POTS is easy to feel like a car in a farmer's field.
:-)