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

You are not alone!

I started this blog just over a month ago to document my progress on this new treatment protocol from Dr B. Levine of Texas.  Writing this blog has prompted me to surf around on the internet looking for news and for new research on dysautonomia. I have found MANY people who are looking for help, for information, for confirmation that what they are experiencing is real.

Living with POTS or OI can be isolating, infuriating, discouraging and at times, desperate.   The condition is not well understood by the public or by the physician community.  People can live with symptoms for years without a diagnosis.  Physicians can be unsupportive; doubting a person's complaints.  Patients can be left wondering if their pain, their fatigue and other symptoms are all in their heads.

Some people are treated like pharmaceutical guinea pigs and are given prescription after prescription with little understanding as to what will actually works or the consequences of taking the drugs.  Some people give up hope and decide to live with their condition; disabled and suffering.

For those of you who are on the hunt for answers here is my reassurance to you:

The condition is real.  There are many people who suffer like you.  There are doctors who understand.  There are proven ways you can help yourself to feel better.  You are not alone.

2 comments:

  1. Nice one Elizabeth. I think the info on the internet is so fractured and that often what is there is not what patients actually need or want. When I started my blog I received so many emails from people simply saying thanks for letting me know I'm not alone. Here is Aus there is basically no information. I've been looking at ways to unify information and to expand it past the basic info that's generally out there and make it more patient focused. There are many great sites out there but accessing them can be very hard.

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  2. Thanks Rusty! I agree with you completely. However, I am disappointed there is not more info available in Aus because of the Yellow Wiggle story. I thought he was involved in raising awareness?? (Perhaps only with the 3-7 year olds?) If you are interested in hearing about some ideas for getting the info out on this side of the water, let me know via email. It would be very cool to collaborate!

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