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

To Use or Not to Use Medications to treat Postural Orthostatic Tachycardia and OI

One Patient's Perspective...
Which treatment, if any, a patient chooses in managing their POTS or OI is a deeply personal one.  Only you know how you feel and what makes you feel better.  My choice, as a POTS and OI patient is to avoid medical interventions.  I realize this is not everyone's choice and I realize some people do not agree with my position.  That said I offer no apologies.

Why I believe Dr. Levine is on the Right Track
Postural Orthostatic Tachycardia is not a well understood condition.  Although centers like Vanderbilt have done terrific work in their investigations there are still many unanswered questions about what causes orthostatic intolerance in patients.  In fact on the Vanderbilt website they say directly "the etiology [cause] of OI is unknown"  they also say that they believe the cause is "heterogeneous" [multiple possibilities].

Perhaps it is my background in the technology industry which makes me think of the human body as a large and complex software program.  What I know about large and complex software programs is if you try to fix a software "bug" without hunting down the source of the bug you may create additional and unexpected issues.  You can try to build "workarounds" if the bug is untreatable or can't be found but workarounds may lead to more problems.  In my mind, medications for OI are like workarounds.

Unlike most software programs, the human body is highly adaptive.  If our bodies have a defect, we can help our bodies adapt and compensate and sometimes the body can adapt without our direct intervention.  There was a study out of the University of Montreal in the late 90's that found blind people to have better navigational skills than sighted people. Orthostatic Intolerance which can be invoked through environmental conditions such as weightlessness seems to me to be a condition that the human body can learn to adapt to.

Dr. B. Levine has found a formula for helping our own bodies compensate for Orthostatic Intolerance and researchers seem to agree that orthostatic conditioning is emerging as one of the most important treatments for the symptoms OI.

If we can help our body's natural adaptive capacity to compensate for the condition of Orthostatic Intolerance we may not remove the cause of the OI but we can live better with it.  If we try to use "workaround" fixes in the form of medical interventions, it may interfere with the body's natural adaptive capability and cause additional problems.

So in my mind I am going to help my body adapt to OI as much as I can through orthostatic conditioning, nutritious foods and increased sodium and fluids.  If after I been on a regime long enough to maximize the benefits of my body's adaptive capabilities I still experience unpleasant symptoms I may then seek medical intervention.

That is my take on POTS, OI and medical interventions.  Orthostatic conditioning is not a quick fix and it does require dedication, tenacity and commitment but in my mind, it is a more reliable "fix" until such time as scientists figure out what causes the condition.

Elvis and Orthostatic Intolerance

What do they have in common?  The answer is the Yellow Wiggle.

Did you know that the Yellow Wiggle, of the world renowned Wiggles, has a huge collection of Elvis memorabilia?  AND he suffers from orthostatic intolerance.

After watching Greg page, AKA Yellow Wiggle, perform in the famous number "Monkey Dance" it's clear that Elvis is the source of Greg's creative inspiration for the dance.

Last week it was announced that the Yellow Wiggle has joined forces with Elvis's former roadie, Joe Esposito (I thought he was a hockey player?), to create a "museum tribute" to the king.  Many of Elvis personal treasures will be on display.  Well worth the journey to Parkes NWS, Australia if they will have the famous "fried banana sandwich" skillet in the collection.

The Art of Being Useful - Life with POTS and OI

I was going to entitle this post "The Art of Being Useless".  I changed it because what I want to explore is overcoming the feelings of "uselessness" one can have in living with a chronic condition.

What makes us feel "useful"?  Perhaps it is one or some of the following:

  • contributing to others
  • getting things done
  • creating something
  • helping others
  • expanding our horizons
Living with postural orthostatic tachycardia or orthostatic intolerance (fully spelled out for the benefit of the search engines)  can be a daily repeat of useless living as described in this excerpt from a 2009 article from the American Heart Journal written by our gang at the Vanderbilt Center: 
Postural tachycardia syndrome (POTS) induces disabling chronic orthostatic intolerance...[and] is characterized by symptoms (including palpitations, lightheadedness, chest discomfort, shortness of breath, blurred vision, and mental clouding) that occur during standing but resolve with sitting or lying down. POTS is associated with a very poor quality of life and significant functional disability... to complete article

POTS and OI can prevent us from working outside of the home or carrying on our normal lives.  It certainly impairs our ability to contribute, help others and get things done in any normal sense.  So how can we turn feelings of "useless" into "useful" given this challenge?

My thoughts are that perhaps we adjust our expectations to the new reality.  I was inspired to read a post on a discussion board for Dysautonomia by "E"(not her real name) who made a really good point...
Rebuilding your life to accommodate your illness will bring you contentment faster than fighting all the time to reclaim the life you used to have. I wanted to be a nurse anesthetist, it was a dream that got me through nursing school and into critical care. I have since had to stop working and create a new plan for my nursing career. So now I am getting my master's degree, one class at a time, in the hope I can teach online when I am finished. It wasn't my orginal plan, but it is a fine plan never the less.
I think "E"(not her real name) is absolutely right.  If life serves up lemons, make lemonade!  Let's do the best with what we have now.  It may be less than we expected to achieve or accomplish or it may be different from what we had hoped.  A glass of homemade lemonade can be delicious! (I'll put a shot of tequila in mine)

Halfway through Dr. Levine's Exercise Protocol

Living with Postural Orthostatic Tachycardia Syndrome and Orthostatic Intolerance can be very challenging.  However, perhaps there is light is at the end of the tunnel...

Today I went to the gym to do my prescribed exercise.  I walked in upright, I had a little dizziness, but it didn't impair my ability to get up the stairs.  I had energy and felt pretty good.  I got to the weights section of the floor and looked in the mirror.  I CAN SEE MY MUSCLES!!!!!  Oh yeah baby, this regime is starting to make me look buff.
Midway through the protocol how well is it working?
 I am definitely, without a doubt, feeling better.
So what have I done so far?
  • Sleeping with bed wedge and many pillows to raise my body on an incline
  • Drinking 3+ litres of water daily
  • Consuming <10,000mg salt daily with meals
  • Eating nutritiously and regularly
  • Taking vitamin supplements and no meds
  • Performing exercises almost exactly as prescribed
I am also recording what I eat, what workouts I do and how much salt and water are consumed.  I don't know why being so anal about writing everything done helps but it does help.  Perhaps it reminds me how seriously I should treat this entire regime and how important getting better is to me.  

Soldier On!

Reply to "S" - How to feel better with POTS

Here is a reply to a message I received from a fellow patient of POTS and OI.  I thought I would repost here in case it is of help to anyone else:

Dear "S" - I am so glad you are reaching out. For me when I am feeling really crappy it helps to know there are others that have been there and done that! I will try to answer your questions one at a time based on what I have learned over the years and what I have experienced. Remember I am not a doctor!!!

Building blood volume: This seems to be THE most important aspect of reducing symptoms. Drinking 3-4 litres of water daily and LOTSA salt with food is key.

I can lose track of how much water I am drinking so I fill up a large jug which I know contains 1.5 litres and when it's empty I know to fill it and drink it all again for a total of 3 litres.

I am perplexed by your doctor suggesting that you sleep with your feet elevated as this is what research teams do to patients in order to provoke orthostatic intolerance in patients for weightlessness simulation experiments (see the articles in my Spaceman's post). I am sticking with elevating the head of my body.

The purpose of exercise is to gradually recondition your cardiovascular system. You've probably heard about athletes who must train their bodies to compete in places where there is higher elevation - similar situation for us OI sufferers. We must train our bodies to function while standing. Read my post on Exercise.
Figure out using the heart rate zone calculator what your zones are. Then do the exercises as per my page suggests. Start slowly and try not to miss a day.

When I was bedridden I did situps, arm weight lifting, leg lifts. After a while I could do so many situps that it became aerobic!

Day 48

Hurray!  I feel much better today.  Not symptom free but more energy and less dizziness.

Today's plan based on energy level:
  • Do prescribed workout
  • Do power snooze
  • Go grocery shopping AND cook dinner
  • Brush hair AND teeth
WOW !!  I think this week is going to be awesome.