Hi, everyone. I'm new to this forum, but I was so happy to find it, since I've felt so alone in this. It appears to be a slow moving forum, but that's okay, there's plenty to read here. 

Anyway, I'm 25, and was diagnosed "officially" I think December of 2014, after having headaches for about 2 years (that I just figured were migraines due to being a woman wild bad hormones, until my optometrist told me my optic nerves weren't right and to get checked out).

I was originally on Topiramate, then off that and on Diamox, now (starting today) back on Topiramate and Diamox concurrently. And I hate the Topiramate, it makes me feel so stupid. 

I never considered myself fat, maybe just a little overweight. But since being diagnosed, it seems like that's some magic cure-- "lose weight, no more headaches!" preached by my neurologist. But it's hard for me to go out and run five miles, it's like he forgot I have crippling headaches that chain me to my bed. 

So, that's my story I guess. 

Anyone have some weight loss tips for those that can't hardly move?

hi Sharky;
I'm so sorry that no one replied to you before now!  I think that some of the regulars, including me, have had some issues that have distracted us from watching for new members.  plus the usual holiday drama.  so, welcome to the forum! 

so sorry about Dopamax, I couldn't take it.  had the same problem with Diamox too.
most people have the same issues with doctors thinking that weight loss is going to fix the problem.  I was stick thin and it didn't help me one iota, and many here get sick when they are thin and then get fat after diagnosis.  it certainly is worth a try, but I wish the docs wouldn't give people guilt trips or put so much emphasis on it. 

exercise with IIH is definitely a big problem.  just do what you can do.  get up and walk around the block.  I could never make myself do it when I was really sick, but now I wish I had.  after I got better (after jaw surgery for my sleep apnea), I found that I could clear brain fog with exercise.  the trick is that if you have a significant Valsalva trigger, then you have to be very careful to never grunt or hold your breath with exercise, do not strain at all.  yoga can be good because it trains you to keep breathing.  I was on a weird diet after I got really sick, and lost 40 lb on that even though I didn't exercise, so it is possible to lose even without being able to exercise.  at that time I did not know what was wrong with me, and was willing to do anything.  2/3 of my hair fell out from protein wasting, so I wouldn't recommend that diet to anyone.

Hi and welcome to the forums. I'm so pleased you found us although I'm sorry to read that you had a rough start with medication. I myself didn't put on weight until they put me on steroids for pain, but I've found that cutting out having a lot of dairy, potatoes and bread has helped tremendously. I also don't eat fried, fatty or processed food. I cut down on my fruit too because I didn't realise just how much sugar is in a lot of them. I know it's not to everyones taste but I drink pure green tea. It's got a lot of health benefits to it, especially for your kidneys.

HI sharky,

I am new here too.  During the time I was diagnosed I dropped down to 114 lbs and it made NO difference.  I lost 50 lbs.  I had doctors tell me that I couldn't IIH because I was not obese. I felt like I was beating my head against the wall.   I am back up to 160.  I did notice that I gain weight when my pressure increases.

There are unfortunately who aren't experienced in treating IIH, and therefore don't realise there are other triggers. Have you noticed headache when you exert yourself? Exertion can bring on migraines, and there are particular ones we are susceptible to, see our A-Z on headaches common with IIH. We also suffer with fatigue, and both of these cause inactivity, which would explain your weight gain. Sticking to a healthy diet and cutting out processed foods, as well as maintaining a healthy calorie intake, will all help. You know you can lose the weight and you can do it again. Keep a log of your physical activities and how they affect you. This will help you to adapt by finding the ones that you can do comfortably.