living with iih

hi, im newly diagnosed ive only had iih and severe Papilledema for about 3-4 months now. its been a nightmare. the lumbar puncture had left me with long term back and neck pain. im currently on 500mg of acetazolamide. sometimes i feel okay and other times id rather pluck my eyes out than deal with the pain. my neurologist has no idea what to do and cant answer any of my questions because hes never seen a case of iih before. i keep getting told to lose weight and cut a lot of things out of my diet, like salt, but no one will tell me how or what to actually do. ive lost about 10 pounds and nothing changed. it definitely feels like a hopeless situation huh? youre not alone hun its awful but we'll find a way out. i'll share any and all new information i get in case it might help.

Hi Charlotte

Im interested to know if your symptoms have improved with the new tablets. ive recently had a spinal tap to reduce the pressure and theyve put me on acetazolomide which is making me feel horrendous, particularly with the blurred vision.

also been told to lose weight which is easier said than done when youre bed bound with migraines!!

I am newly diagnosed with IIH without vision loss. My opening pressure was 28. i was prescribed topiramate but i have not noticed any improvement yet. Still titrating up my dose. I get some side effects from it like bad taste in my mouth, lack of appetite, tingling. Still having terrible headaches. I have been out of work for two months, but i also have mono at the same time. I have horrible dizziness, nausea, fatigue. I tried diamox but couldn't handle the side effects. I have lost 25 pounds since I got sick, but no improvement in symptoms.

hi I suffer with chronic IIH and papilladima, I've been on 500mg azetazolomide for over a year now and recently been put on toperamate 100mg, my eyesight is very bad, I am light sensitive, I have headaches daily sometimes migraines sometimes niggily but always there, I've had 1 lumber puncture since being diagnosed a year ago and thatabdie to having a bad experience, the doctor didnt know what she was doing, kept inserting the needle in and out I was screening out in pain, its left me with back pain and neck and shoulder pain, I have memory loss which is upsetting as I've spent so much money learning how to drive but now I know why I havent been able to learn properly, I've also been told I wont be able to drive anyway. I'm finding it hard living with this illness especially as people around me dont understand it, I fell drained a lot and the smallest of tasks feel big, how do u all deal with it on a daily basis? I'm at my wits end, just want to feel normal, all I've been told is to lose weight, but I eat healthy, all I ever drink is water I dknt like alcohol anyway, I've lost 2 stone since the start of the new year i exercise regularly even though it drains the hell out of me and whilst doing it I feel like I'm going to pass out and my brain rattles the entire time, doctors dont understand IIH neurologists dont really understand it so how are we ment to? x

hi I've been diagnosed with IIH for a year and a half now, I've been on azetazolomide 500mg since diagnosed and topomax 100mg for a couple of months, I've done a lot of research on the medication as I am on other medication aswell so I wanted to make sure i would be ok, azetazolomide is for the pressure, it slows down the ch fluid buildup around the brain which will help the pressure, topomax is for the headaches and can also help with weight loss, I was told this with both medications from my neurologist and on doing not own research also confirmed this, so I'm unsure why you were told topomax would help with pressure, as azetazolomide is designed to slow down the ch fluid build up around the brain which causes the pressure not topomax, if you are unsure do some research of your own, as most doctors dont understand IIH themselves they dont fully understand exactly what the medications do just the basics, also speak to your neurologist of you are unsure about anything, ask questions and tell them what you have found on your own research, as your pressure was ok on LP they may not put you on azetazolomide at the moment as they normally only put people on this if their opening pressure is high on LP, but again speak to your neurologist I am not a doctor I am just speaking from experience and research ive done from being on the medications myself x

csf 23 was diagnosed this year, but have had icp for more than 4 years. Have been treated for the last 4 years by my reg. doctor with diamox 1500 mg and topirimate 25mg.

have burning headaches, nauseous, dizzy ...its not fun. plus a toddler. I've lost more than 40 pounds. I'm still battling all thee above. I know ...it might get better....somewhere over the rainbow. This helps me, some days. Oh, and I fired my neurologist, after spinal tap...was a butcher.

Hi ive been recently diagnosed with IIH ive had 1 lumber puncture at 40 which im told is very high. I was initially given acetazolamide 500mg which has now been raised to 1000mg as my constant headaches and wooshing noises in my ears haven't changed at all. I've been told all i can do is lose weight, which I'm trying to do but finding difficult as i also suffer with under active thyroid. Any one else still suffering with headache and wooshing noises whilst taking medication. Any guidance welcome as this is all new to me. Thanks