My wife was diagnosed in September of 2009 with IIH. The event that brought the Neurologist to this possibility was the discovery of Papilledema. On the spinal tap the opening pressure was 28. Yes she is obese (BMI is 40), but her blood pressure is consistently 120/70. Shortly after the IIH diagnosis, she was diagnosed Celiac (done by blood test). Since the blood test is not the gold standard for diagnosis, she was scheduled for a biopsy. However, once the biopsy time came around she had already gone 6 months gluten free. She underwent a 4 week gluten challenge and the results of the biopsy showed completely flattened villi (the Gastroenterologist wouldn't even assign a rating to it, that's how severe it was). It has been over 6 months back on gluten free diet (a follow up negative anti-body blood test confirmed it), yet she still feels lousy, severe fatigue, aching legs, and the chronic symptoms of IIH still there. She has migraines, pulsatile tinnitus, sensitivity to bright lights. She did lose 10% of her previous weight and I've read that that should help resolve the IIH, but it hasn't. She also seems to have recurrent Bell's Palsy episodes where I notice the left side of her face is a little slack and her smile isn't bilateral (and when she speaks it looks and sounds like a lisp). My question is: What is going on here? The doctors are getting ready to throw their hands up as they think they've exhausted every possibility (which I disagree with). In my opinion I don't think the human body can live on for a long time under these conditions. If anyone has any insight I would be forever greatful.
Brian (extremely worried husband and father)