Well, hello! I'm Leslie from the Gulf coast of Alabama. I'm in the process of being diagnosed with IIH and I'm so glad I found this group!
I'm a 43 y/o married mother of a 19 year old. I've had really bad headaches for years with sporadic dizziness...which had been diagnosed as Migraine Associated Vertigo and Chronic Migraine. Treated successfully with a combination of maintenance meds since 2005. (Toprol XL and Amitriptyline.)
My husband retired from the military last year and we've moved from VA and to AL. Unfortunately, my headaches and dizzy spells been getting worse over the past four months which prompted me to start making new doctor appts in the new place we live.
The first time I head IIH was a few weeks ago, I went to an ophthalmologist since I knew it had been years since I'd been and my 20/20 vision was starting to get worse. I couldn't get a cheap dime store set of reading glasses to help my vision...that what's really led me to the eye doc. ;-) ...Well, the opthalmolgist spotted a papilledema and sent me to a neuro. The neuro saw the spot, explained what IIH was, and scheduled me for an MRI and a LP. The MRI came back fine. It took a couple of weeks to get an appt. for the LP. To be honest, I almost cancelled my LP at the last min. bc (ironically) at the time, I was having some good days and hadn't felt that good in months, but the nurse assured me that I still needed to have my pressure checked. ...Regardless of having some good days where I felt great and was functioning normally!
During my lp, the radiologist said my pressure was normal. He drained some for testing (?) and sent me on my way. The second I started to lay on my back for the 4 hour wait after the lp, I got the most horrible dizzy spell. The next day I got the dreaded lp headache and stayed incredibly dizzy. ...Needless to say, 12 days later (today) I finally feel better. Got dressed, took a shower and left my house! Yay, me! (It is the little things that really matter sometimes, isn't it?)
So, now I'm just waiting for the appt with my neuro. He said he'd "seen worse cases" of PTC/IIH and that he was sure with weight loss and diamoxx, I'd be fine. After doing a lot more research, I hope he's right, but I know that this is just the beginning of my journey.
Can I have a normal opening pressure, have a papilledema, get headaches/dizziness/neckpain/etc and NOT have IIH?