Sorry my link didn't work, I forgot I had to type out the word "foundation".. here is the link again.http://www.ihrfoundation.org/
It is rather interesting to see how intertwined our issues can be... I was just put on prednisone over the weekend and my IIH has seemed to lessen a bit. I see my neuro-optho tomorrow so I plan on discussing this with him.
I think that the IIH causes people to be overweight with the extra added fluid retention. I have noticed and provided the IIH registry with feedback every year from my doctors with my health information about my weight and swelling symptoms vs. IIH symptoms. My weight goes up in tandem with the increase in the pressure in my head and the symptoms of the IIH. I also experience alot of fluid retention and peripheral swelling as well as swelling in my abdomen when the pressure is high. When I am treated with mega doses of Diamox and other diuretics the weight falls off dramatically and then I see the IIH gradually start to resolve/lessen. I lost 60lbs very fast, in a matter of a few months from excess water retention without any change in diet or exercise. So I do not in my opinion think that this is a disease of someone who is just from being fat. I think the disease causes us to be fat and I told the registry this and in the last news letter I received they have found evidence to this as well. Only time will nail it down though...more research is needed they say!
Any how...I was just curious how many of us with AS might have IIH too since it is an inflammatory disease like Lupus which does have a known connection to IIH. I do think AS is my connection to IIH. As a matter of fact I am now positive it is.
By all means, if any of you think you may have a connection with IIH do look at the website I posted and see if you have any symptoms that match. A lumbar puncture is the only way to get a definitive diagnosis and they are not much fun, especially to a patient with AS. I have had to have 2 of them before I knew that I had AS and they both ended up with horrible low pressure leaks requiring emergency blood patches (most painful time of my life). I have been advised to NEVER get them again and to only rely on MRI for my IIH monitoring (I have an empty sella/flat pituitary, if pressure was normal my pituitary would not be flat causing an empty sella).
Do get checked out by an eye doctor immediately. This condition is very serious, if you think you may have this condition..
I would be interested in following your stories, please keep me informed....
Best of luck!