Avatar universal

Chronic Idiopathic Intracranial Hypertension

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)
1 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I'm not really sure what your question is. Yes, all the literature on IIH will say that it hits obese women of child bearing age most of the time. Some individuals find relief with weight loss, but do not be fooled. Weight loss is no cure for IIH. All the doctors I see tell me I would have to become rail-thin in order to find relief through weight loss.
Helpful - 0
Have an Answer?

You are reading content posted in the Neurology Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
5265383 tn?1483808356
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease