For people diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Intolerance (OI), follow me as I document my progress towards recovery while on the research treatment program by Dr. B. Levine of Texas Click here for more...

Monday, December 17, 2012

Update or Why the Woman Fell off the Rowing Machine...

If you have read some of my previous posts you will have learned that during one of my exercise sessions on the rowing machine my blood pressure suddenly crashed and I fell off the rower. That marked the start of the progression of a pre-existing condition which had been causing my POTS and OI.

As someone who has experienced POTS and OI on and off for many years and, in some previous instances, was confined to a wheel chair in order to get things done, I have always told myself "it could be worse; I could have a terrible skin rash and be itchy all day".   Well, I don't have an itchy skin rash but I do have Ehlors Danlos and a progressive mast cell condition which I might consider swapping for an itchy rash if one could do such a thing.

When I started my blog I wanted to share my experience with the Levine Exercise Protocol and what it did for my POTS symptoms.  More importantly, writing was my way of framing my reality of living with this condition.  Writing helped me examine some of the reasons why I was so physically challenged and what steps I could take, based on evidence, to make me feel better.  My writing was like a mirror in which I could see myself and my challenges objectively.

What overtook my writing was the blog became a source of information and, I think, optimism for others suffering from the same condition.  I began to feel an obligation to continue to write for the readers with optimism and to provide information because I wanted to help those who live with POTS and OI.  However, my mirror was gone and and I could no longer write honestly about my challenges.

It has been almost one year since I stopped writing and I would like to begin again.

But like a traveller from Boston who thought they were taking the "Northeast Regional" train to Virginia Beach when they were actually on the "Downeaster"on their way to Portland I find myself on a different journey.

Do I still have POTS and OI?  Yes, I have the collection of symptoms described as Postural Orthostatic Tachycardia and I also experience Orthostatic Intolerance.  What makes this journey different from what I expected is that it may end sooner and may end in a place that doesn't offer the same amenities as Virginia Beach.  But while on the train I will be as productive, useful, curious and strong as I can be because life is the most wonderful journey.

2 comments:

  1. HI Elizabeth,
    I too am looking into MCAS due to many many food intolerances and certain episodes where my condition deteriorated very quickly for no apparent reason. Well other than I was climbing up and down in my attic cleaning it out for consignment. A year later after a doctor mention possibly allergies, it dawned on me how much mold and dust I was exposed to for several days. Odd thing is that is takes a few days for the symptoms to manifest, but when they do watch out! It's like a train derailed and it's very difficult to stop. I then start re-acting everything I eat and smell. I have emailed Dr. Afrin in Charleston, SC outlining my symptoms and he said I sounded like a classic case of MCAS. He doesn't have an available appointment until February, but a lot of people on the forums have gone ahead and put themselves on H1 and H2 blockers with decent success. I haven't tried that yet. I'm sure you will be getting around to what your diagnoses have meant as far as treatment, so I am looking forward to hearing about that. Blessings
    Ashley

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  2. Hi.Didn`t Dr.Levines Exercise Protocol cure you from POTS?I remember reading a comment you posted about no longer having POTS.I got really optimistic when I read that,beacuse I also have POTS.What has happened?

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