Psuedotumor Cerebri/ IIH Anyone?

I'm looking to see if anyone else has been diagnosed with this lovely *eye roll* neurological disorder. I was diagnosed with it in 2005 and until this year the symptoms had been manageable. The first (among many) reasons I got RNY was to help manage it. While my daily nausea and vomiting have stopped, I'm still having a bi-weekly severe headache. I'm taking acetazolamide and the occasional Fioricet to help. I'm hoping there is someone on here who is farther out on their journey who could give me some insight on how the symptoms are for you. 

My wife was diagnosed with it in 2002. Bad migraines, optic nerve sheath surgery, numerous spinal taps and extensive pharmacological treatments that led to kidney stones.  However, the severe migraines (nearly constant and only treatable with knockout doses of opiates) persisted and her vision continued to decline until out of desperation we opened our minds and began reading a lot about inter-cranial hypertension.  

We finally decided to go off the reservation and try something alternative. Within moments of partaking of medicinal herb, her migraine abated, and over the next few months her headaches were rare, her vision improved and life became livable again.  That was 2010. 

Her neurologist and neuro-opthomologist recognize her dramatic improvement, despite no longer taking expensive prescriptions, with a wink and a nod. 

I was diagnosed in 1993 with PTC.   UGH.  It was miserable.   Mine went away on its own (two spinal taps and months on that awful diuretic).   The headaches and jaw pain lasted a year or two, and I relapsed in 1997 for awhile.   Then I lost weight on my own and symptoms resolved.   Started having babies in 2001 and I didn't have any symptoms again.   In hindsight I was very lucky.

My sister also was diagnosed with it in the early 1990s (though our doctors swear there is no genetic or exposure components??) .  Hers also resolved itself.  She did have some optic nerve and vision problems that lasted.

My sister's RNY was 2003, mine in 2012.  Neither of us have had further symptoms.

I'm anxiously waiting for my RNY in March for the same reason. I have been on Diamox and lasix for 2 and a half years and it's miserable. My surgeon did say though he has performed WLS on several IIH patients and within a year their symptoms were gone, complete remission. Praying this happens for me and I'll pray it happens for you as well. 

I was diagnosed in 2002, right after my daughter was born. They would have diagnosed me much much earlier, but none of my previous doctors had ever had a patient with PTC and didn't want to diagnose it. Looking back at my medical records, I should have been diagnosed ten years earlier!!! Spent most of my adult life on Maxalt, acetazlomide, etc with NO success. By the time I was looking into surgery, I was getting multiple spinal taps PER WEEK with a surgery scheduled to place yet another shunt (had 7 total, 6 fail and one was too narrow). Excrutiating migraines 9 out of 10 days were killing me....literally!! Then in 2010 they found the first actual tumor around my optic nerve and pituitary gland that grew really fast and they couldn't take it out. :( That was the last straw for my neuro and she referred me to a surgeon. I saw the surgeon, did my preop work, and was approved with a surgery date in under a week. I will be 2 years out in April and I have not had ONE SINGLE MIGRAINE in over a year, no medication, no spinal taps....nothing!! I still have PTC and occasionally have visual field disturbances from permanent damage, but even those instances are few and far between. My neuro team is astounded by the progress and told me at my last appointment that they expected me to be permanently blinded and in a long term care facility by now due to the severity of my PTC. Even my tumor has shrunk to 1/10th it's size and I don't have to worry about that either! They biopsied it and it's benign! WOOHOO! But here I am, at 118 lbs ... living for the most part a more normal life than I could ever have expected!!! Keep your chin up- not everyone's symptoms fade away as drastically, but they do fade some!!

Poppy