Hi, i love finding groups like this its so encouraging. My name is Gilliana iam 28 yrs old. I have had migraines since i was a very young child around 5 and everything was just pushed off to saying i had chronic migraines and nothing was done. I was dx'd with IIH or PTC, whatever ur reference is almost 5 years ago. I was dx'd by my neurologist. The first couple of years we attempted every med that was possible to help with the effects of IIH but nothing was working after taking 25 or so pills a day for the first year my doctor asked for an LP and i agreed. We soon found out that the meds was not working, so i got more added some decreased some taking away. With my life basically at a stand still, my doctor requested permission to get another opinion about what we should do (he nor i wanted to do a shunt) I was sent to the university medical center here and was told basically sorry you dont have PTC you dont have any pressure around your eyes and sent me on my way. Things just continued to get worse meds was not helping so a 2nd lp was done and my pressure had increased, i literally laid in the OR for 2 hours while fluid drained from my back . At that point my doctor said no more lps, and sent me to a surgeon. I had a VP shunt placed in January 2011. I still get my daily headaches and migraines weekly, i have opted out and stoped all meds together. My body was just breaking down from so much stuff. Theres days i regret doing the shunt but then i think about what would be going on if i had stayed on the meds. My kidneys would have shut down, and i dont much enjoy being out of reality due to being medicated. Theres no quick fix or any slow fix to this disease and ive learned that fast. Meds dont always and wont always work, and surgery is just a temp. solution.

Hi Gilliana!

Welcome to the group. Glad that you have found us and sorry to hear that you have been through so much with your IIH, and have found so little relief. I can relate to some of your feelings and experiences, still dealing with symptoms coming up on 3 years now, and facing another medication change. Except for the shunt, which I have not done. For me, it's very much a day to day thing of managing the symptoms, learning what works and what doesn't, and taking care of myself as best I'm able.

We're always here for help and support, and glad to have you along. I'm sure you have lots of experience you can share to help others here, too! *big hugs*

Hi Gilliana, welcome to the group! I completely understand your decision to get rid of the meds. I was taking 23 different meds at one point (some 3-4 times a day). I started having problems breathing and my PCP said enough. He took me off everything because he couldn't tell if it was a symptom or side effect. It was the worst 8 weeks I've ever experienced, but it saved my life. I also was diagnosed with PTC and told that wasn't my issue when sent for second opinion. It's definitely a frustrating disease and I'm sorry you're still suffering even with the shunt. Have they tested the shunt or talked about any other options? Some members have gotten some relief from alternative therapies. Check the site and let us know if you have any questions..we'll do our best to help you through it.

Take care,
Julie

Thank you ladies. Its nice to be able to have people around that understand what we are going thru.

Heelp Gilliana and
So sorry to hear that you are still having such issues. I have found that dealing with IIH is a lot of trial and error. I too tried many meds and finally had the shunt surgery (I have a lp shunt). I still have to take meds but we keep plugging away trying to get me feeling better. But that's me. Each of us is so unique when it comes to IIH.