there are many who get better with weight loss but also those who do not. I am one. I was sick as a dog when stick thin. there are several males on this forum who are quite thin and still having ICP issues and eye issues. there are others who were really sick who lost a lot of weight but did not get better until they lost just a little bit more and changed their diet. I think it probably has to do with neck anatomy and jugular venous compression. for some, losing fat in the neck reverses the problem. for others, it does not. I had jaw surgery and it moved my mandible 1cm off my jugular veins, and I am doing a lot better. treating my sleep apnea helps a huge amount. your docs parrot the party line but they probably haven't thought about it as deeply as some of us here. so do keep losing the weight, because you don't know if it might help you, but don't let your docs bully you. ask for a sleep study. hopefully others with IIH who are thin will reply so you can report to your docs that they are wrong.

Well that stinks. If someone knows of a published study that shows IIH is cured by weight loss, please let us know!
Personally I think something might happen that causes weight gain, or prevents an easy weight loss, with IIH. I suddenly went up a few sizes in the 2 months before I landed in the hospital. After I had shunt surgery I quickly lost a lot of water and weight. My hands shrank. That being said, I was also very miserable and changed what I eat. I no longer drink soda pop or coffee (I had mine with cream and sugar). I don't eat much meat. Don't eat much processed food or snacks. We buy organic fruit and veggies. All of those little things add up and really make a big difference. That weight that I had gained all came off. You have to be willing to take a serious look at eating habits and turn things around. I also read a lot of health blogs.
I starting taking supplements recommended by my doctor and ones that are supposed to help with pain and it has helped me. I too think there is a flow problem and I just started seeing a chiropractor that specializes in cervical and skull alignment. I am hoping this further helps me. Sometimes we have to do everything we can on our own.

Every doc I see because of my ih does a double take at the examining room door and then quickly says "oh, you don't look like the typical ih patient." The first time this happened, I was stunned and didn't "get it" but when the second guy did it too, I came out and said "you mean that I'm not fat?" I'm a normal bmi and I've had ih and paps for almost two years. It's not a given. I think food plays a role, but hormones and spine structures matter. It's not as easy as docs make it sound. Hugs.

I think I have been run over by those same 2 trucks. I was seeing a neurologist who doesn't believe I even have PTC because my first 2 LPs had OP of 18 even though all my symptoms (except short term memory loss) went aways for weeks. Next LP was 33 and I now have a VP shunt which I have started having trouble with. I just had another LP and had an OP of 26 so the NS adjusted the shunt to 1.0 from 1.5. Even my family doctor is frustrated for me so I am going to a neurologist in Boston in May. I am so discouraged and truly hope I will get some help from this new doctor. It seems like almost every day something new develops.
Cathy

Just like the others said... weight loss helps some, but that's not the only cause! I was on the low end of normal bmi when I was diagnosed, and have since lost 15 lbs due to diamox. Now, I'm underweight and STILL have symptoms.... You can only lose so much!

I think I just cheesed the neurologist off. In all the discussion of how I need to lose weight to get off the medicine...I legitimately forgot to mention some new symptoms. I'm gonna ask you wonderful people because his nurse was not too helpful either.

Since I started taking Diamox I've had ringing in my ears - that's a known side effect, but in the last two to three weeks it sounds like on top of the ringing there's a helicopter trying to land. It's not a heartbeat, cuz it's faster than my heart, but it's LOUD.

Above my right eye, especially when I'm laying down I have started getting a weird head pain that feels like boiling water - inside my forehead.

Back in December when I was taking lots of medicines, I had a lot of issues with balance. Within the last two weeks I've almost fallen, tripped, bumped into, stumbled, etc more things than ever! All I'm taking is Diamox and Topamax and yet I can't stay on my own two feet!

I know my pressure is high and I'm hurting a lot today. His solution is to lower the Diamox and get rid of the Topamax - will that help with the pressure though?

My fat dr(that's what I call it lol) is sure that its curable by weight loss