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,.