Hello everyone! I started this for him so that people who are going through VSG and have IIH have a place to get information. I was diagnosed with Idiopathic Intracranial Hypertension November 2009. It's been a rough road for me and has changed my life for the worse. For me when they started doing the lumbar punctures and changing the pressure dramatically in my head It took my life and spun it downward. In January 2011 I had a Shunt placed in my left ventricle. Although it's cut down on pain medicine and my intake of Diamox, it has Still altered my way of life. I choose to do WLS As a last ditch effort to save my vision. Whether or not the surgery and weight loss will help my IIH I am still very ecstatic about finally losing weight. Please feel free to join this group. I Hope for a cure

I too have IIH (Pseudotumor cerebri, normal pressure hydrocephalous, and a few others!) I'll try to be brief-by leaving out lots of "minor" details. I started having headaches after my hysterectomy in 2011 (summer). By the fall, I thought I had ear infections and a sinus infection. I felt pressure! My right eye also had pressure behind it. I was sent to an ENT for allergy testing. Yes, lots-mainly a severe allergy to dogs and cats. Next was surgery (turbinectomy and septoplasty) on my nose (which I now have a perforated septum). No relief. I was sent to a neurologist. Diagnosed in 2/2012.Told to lose 10% of body weight and it would "go away". Put on Topamax, felt sad and forgetful. Switched to Diamox. Worse with the sadness. Lost 25 pounds, no relief--30 would be 10%, can't believe 5 more will make a difference.Visual field test showed blind spots and was sent to neuro-opthamologist. July 2012 had Optic nerve sheath fenestration(AKA-decompression) on left eye, right was done 2 weeks later in August. Nursing school started 2 weeks later. Everything on hold. Can't concentrate, felt off-balance. Felt like I couldn't remember anything. Always an A student with no studying-struggled to get C grades (and that was with 30+hours of reading/studying). After semester was over, my new neurologist told me I had to stop driving (went off the road 3 times while "zoning" out). Unclear if they were mini seizures. Put on/tried several different anti-seizure meds. None helped with the zoning out or the pressure. Started having difficulty walking, and talking(forming sentences) I am educated/intelligent but was speaking like a 2 year old (2 and 3 word cut off sentences). Had no short term memory. Jan 2013 was terrible month. Had an LP(lumbar-peritoneal) shunt put in 2/2013, revised 2 weeks later in 3/2013. All along I was repeatedly told to lose 10% of my bodyweight. Have since found out I need to be within 10% of my "ideal" bady weight (hence the sleeve). Couldn't work out due to pressure, any strain made it worse. Lots of nausea, vomiting, and diarrhea come with IIH (for me anyway). Now can't work out with the shunt in my spine (might crush.break it into "pieces". only walking. I have a home gym (nice one) that I can't use! There hasn't actually been a lot of research done on this, and it is considered a rare disease. Unknown cause, only common factors. I have had pressure again for 4 days now, will not tell neurosurgeon until after sleeve is done. If i need another revision, the sleeve will be put on hold again. The weight loss seems to be the important "fix", so I want to get that done. (April 8th) My vision loss is permanent, I had it for over a year(slowly got used to it I guess) before surgery to fix. And I was told it could take up to 6 months beofr my brain was functioning correctly.

I have suffered with IIH for over 2 years. Each day I pray for strength to make it. I don't have vision "loss" yet but my vision is getting worse. Waking up with screaming head pain. I can "feel" myself coming out of sleep and the pain is excruciating. Pain 24/7. I only sleep 4-5 hours. I am now on disability and rarely leave my house, except doctor appts. This disease is life-altering. I would not wish this horrible disease on anyone.

There's much more to my story..... but one word sums it up - suffering.