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

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.

Mast Cell Disorder and POTS - Part III

Mast Cell Activation - Symptoms

If you are reading this blog because you have been diagnosed with POTS or OI then please pay attention to my posts on Mast Cell Disorders as they could be helpful!

People who have mast cell disorders can have a reaction to many different substances such as heat, cold, foods, stress, exercise, scents and infection.  The reactions can range from a stuffy nose to headaches, mild-severe upset stomach, flushing, blood pressure crashes and even anaphylaxis.  According to an article appearing in the Journal of Hematology by Gerhard Molderings et al, they list some of the clinical symptoms relating to misbehaving mast cells.  You can find the list here.  Note the hypotension, tachycardia, syncope, and symptoms describing "brain fog..."does it sound like POTS?

If you are sufficiently convinced that your symptoms warrant further investigation then I suggest you read the full text of the article by Molderings here to find out how a mast cell activation disorder can be diagnosed by your physicians.