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

Love and POTS

I received this press release via email the other and thought I should share the news about this happy couple!  (I have made one or two edits to the original release but only to remove the gritty details on the contest and to calm down the sales pitch)  I think it is really great that these two have found joy and comfort in one another.   May their swoons be swoons of happiness and not fainting episodes from low blood volume!

In February of this year, Steuben, a crystal glass manufacturer in the US, held a sweepstakes contest where the entry winner with the most heartfelt sentiment would receive a fiery red crystal heart- Internal Flame heart, engraved with the sentiment personalized as an engraving.

Kyli Wolfson’s entry of “Our love is a song I want to hear every day,” won the vote and when the folks from Steuben asked for more of her story they learned she and her fiancĂ©, Dustin, suffered from Postural Orthostatic Tachycardia Syndrome. Dustin had said the words of comfort to Kyli during a night when she was particularly sick.

A condensed description of the disorder in the couple’s words is: excessive heart rate increments upon upright posture – meaning you feel faint when standing up – but that’s just part of it. Your heart races as if you’re running in place all the time. Research shows that a POTS patient’s quality of life is similar to that of a congestive heart failure or chronic obstructive pulmonary disease patient. Coping with this disorder requires some serious lifestyle adjustment, and still results in many hospital stays.

Remarking that they’d seen each other at their very worst, Kyli pointed out that they see every day as a date. She continued, “Whether we’re on a picnic or at the hospital, there’s always love between us and a reason to smile.”

Interestingly, although Dustin’s declaration to Kyli describes how many couples feel regardless of age or health, one of the symptoms of POTS this couple shares is an increased sensitivity to sound. When they met by chance, each traveling with separate groups of friends, they were often retreating for quiet time at the same intervals.

In Dustin’s words, “It’s not so much about music…the love is like the melody and the lyrics are how you show your love.”  The tune of his statement was fresh in Kyli’s mind when she made the winning entry to the crystal heart sweepstakes and in Dustin’s mind when he proposed soon thereafter. As the couple plans their April, 2012 ceremony, they will have the hand-engraved Internal Flame as a lasting symbol of their commitment.

Kyli summarized their struggle and triumph with POTS, “Life with chronic illness gets terrifying at times. It’s almost always hard, always a challenge and often very, very lonely. There are times when I feel like I’m stuck inside a house that’s crumbling to pieces…times when the rest of the world seems like it’s moving, moving, moving...and I’m stuck in the same place. But on nights like this one, sick and scared, I remember the blessings…big and small…that have come out of this illness of mine. And I’m grateful.”

About Steuben
Steuben is the premier crystal glass manufacturer in the United States, and the world’s finest maker of pure crystal (according to Steuben). Since the 1930s, Steuben has collaborated with some of the world’s most important artists, including Henri Matisse, Salvador Dali, and most recently Ross Bleckner.

Salt Intake and Managing Blood Volume

There has been some really interesting posts on the new Facebook Group about sodium intake.  When I first started the Levine protocol I gradually built up to 10,000mg per day with the help of my nutritionist.  Working with my local physician I had my blood tested weekly to ensure my potassium levels were ok.

After about a month such high levels of salt I no longer needed such a high dose and gradually reduced the salt to a point that "felt" right.  I found that too much could trigger what felt like heart palpitations and other unpleasant feelings.

Since the purpose of the high sodium is to help with blood volume, it makes sense to combine the effort with the "bed wedge", carefully avoiding diuretics like caffeine and alcohol (I must admit the occasional glass of wine will sneak by my lips) and ensuring plenty of fluids.

The blood volume challenge is, for me, one of the less onerous lifestyle changes to make in helping managing POTS symptoms. Love that salt! ;-)

Day 44 of Dr. Levine's Exercise Protocol for POTS (A.S.*)

Tracking my Heart Rate using Digifit and an iPad
For the past 4 workouts I have being using my iPad, DigiFit software, and an ANT+ chest strap to view and record my heart rate during exercise.  I have found that my heart rate is much easier view on the iPad than on the wrist watch where I have to take my hand off the rowing machine bar to see the read-out.  A difficult maneuver when you're really going at it.

I can input the various workouts prescribed in Dr. Levines exercise protocol into the Digifit software on the iPad.  I can include the duration of the exercises and the specific heart rates zones they are to be performed within.  When I am ready to do a workout I simply go to the appropriate date in the calendar and click on the exercise.  Digifit automatically connects to the heart rate strap and away I go.  Once I am done I can upload the heart rate record to Training Peaks or even New Leaf (if I decide to start a metabolic exercise program).  The only thing Digifit does not record are the gasps and groans coming out of me while performing the exercise.


Today was a day when the protocol dictates I do my exercise on my rowing machine at the highest heart rate zone.  I had to keep my heart rate above 140 for 30 minutes.  This is, by far, one of the more difficult exercises in the protocol but I did it and I did not expire.  This being my second time around for Dr. Levine's exercise protocol for POTS I know that although I FEEL like I am going to expire I actually won't.  (If, on the other hand, I unexpectedly do expire then at least Digifit will be recording the event for posterity.)

My Golden Retriever has POTS...?

You want me to do what?
We know that physical deconditioning can cause or contribute to POTS- like symptoms.  We know that sleeping with your head down and your feet up can induce orthostatic intolerance in otherwise healthy people.  So, if the same can be said for dogs then my golden retriever MUST have Orthostatic  Intolerance or even Postural Orthostatic Tachycardia!

Over the winter months when the snow is on the ground and squirrels are snoozing in their nests, our dog Jack is a master at chilling on his bed.  We have known him to sleep for days, stirring himself only for the most serious situations such as eating, receiving ear scratches and tummy rubs or going outside to do "his business",  If the weather is inclement then he simply refuses to go out of doors, choosing instead to go back to sleep until such time as the weather is conducive for a short walk.  The winter for Jack is couch potato time.

Now that spring has arrived (whoopee!!!) and the little red squirrels are out in force, Jack will be resuming sentry duties guarding against 4 legged trespassers.  Will Jack experience a racing heart rate, chest pain, dizziness, exercise fatigue?  Will the winter-long deconditioning affect his squirrel chasing performance?

Obviously the danger of Orthostatic Intolerance from too much bed rest is of greater concern to working professionals such as circus dogs who must remain upright for prolonged periods.  As for Jack, we will keep him on all four paws and gradually get him back into shape in time for summer.