Neurogenic Orthostatic Hypotension

  My 15 year old sister who lives in Ireland, has finally been diagnosed with Neurogenic Orthostatic Hypotension, after two years of testing by doctors.  We recently purchased a blood pressure monitor and kept a journal of her low blood pressure, and as a result the doctors did a tilt table test which confirmed that she has Orthostatic Hypotension. Her condition is getting worse and the doctors have no idea what to do. They have never experienced this condition before, as it is rare, particularly in someone so young.  My sister is loosing consciousness as many as six times a day, and has been to the ER due to injuries sustained during a number of the falls. The doctors put her on Midodrine for approximately one week, but had to stop medicating her as it was causing severe pains in her heart.  She is no longer receiving any medication for her condition.  Any information or advise would be greatly appreciated  Please Help!
  
  Christine at ***@**** or ***@****
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Thanks for your question.  Neurogenic Orthostatic Hypotension is indeed a rather rare clinical condition, even more so in someone so young.  Therapeutic options include wearing tight-fitting thigh-length stockings, which basically attempts to mechanically limit the venous pooling in the lower extremities when one is upright.  Another option is medications such as Midodrine which specifically cause hypertension.  One common side-effect of such approach is severe supine hypertension and increase in cardiac load.  A third option is a hypernatremic (overload of table salt) diet.  All therapeutic options are basically symptomatic in nature.
I hope this information is helpful.  Best of luck.