Hi, everybody,

I was diagnosed with IIH about 6 months ago, but I think I've had it since my 20's. I have horrible headaches, painful eyes, sensitivity to busy visual images, blurry vision around the edges, painful and stiff neck/back/shoulder, ringing and click-whoosh in my ears, insomnia. My opening pressure was 25. They lowered it to 15 and I felt like a new woman for about a day.

I'm just barely coping. I need sleep, but didn't do well on sleeping pills. The ringing is so loud I have trouble hearing on the phone. Some days my headache is so bad I just can't take it. Pain meds don''t help. I'm ramping up on Diamox, and am on about 325mg right now. Need to get up to a higher dose.

I also have a seizure disorder so things get complicated and a little confusing. Hard to tell what is IIH and what is seizures.

I was finally accepting the IIH diagnosis given by my headache neurologist, and started to feel a little better taking the Diamox. Then I saw a NO who said I couldn't possible have IIH because my opening pressure was only 25, and I dont' have papilledema. He thinks its migraines. I think he's wrong. I've since done some research, and all the literature says exactly the opposite - about 6% of people with IIH don't have papilledema, and OP has to be over 20. So, I don't know what to think. I haven't seen my headache neurologist yet after the NO gave that conflicting diagnosis. My headache neurologist has said it isn't migraines. I think my headache neurologist is right.

So here I am. In the same muddle as everyone else, with headaches and pain and that infernal noise in my ears. It's nice to be in here where I have some company,.

A very big to the group, you're right when you say that you don't have to have papilledema to have IIH, and it well documented too, so your NO, needs to do some catching up. Your Neurologist seems to be more knowledgeable and he's following the treatment plan for IIIH.The fact that since being prescribed Diamox, you have noticed an improvement shows that you are getting the right treatment. If you did have papilledema the Diamox could have made a difference there too, which your NO doesn't seem to be taking into consideration. I'd stick with what your Neurologist is telling you, and the next time you see your NO, here is some information you could give him. Print off any information you've found about it, it wold be hard for him to argue the point then, wont it? Is it possible to have IH without papilledema?