I Have Iih , I'm 19

I'm 19 and ways been fairly fit and healthy, never really any serious health issues. However back in march time last year (2012) I started to put on an incredible amount if weight, in total over a period of 6 months I think I put on around 2 stone at least. Now I eat pretty healthy and was doing fitness twice a week, sometimes more and also was on an acting course so this sudden weight gain was odd. Then I stopped having periods all together.
Back in October I was diagnosed with polysystic ovaries and knew I needed to lose weight.

However in the same month at work over a period of three weeks I gradually got extremely painful headaches, my eyes became more blurry, my eyes seemed blocked and generally I felt tired and sick and had no idea what was going on. Went to a and e and the doctor told me to go away as I had a muscle spasm in my neck, according to him nothing serious. Two days later I was back in a and e being sick had double vision the pain was the worst I've ever felt and was dizzy and disorientated. I had to have a lumbar puncture which for me was a terrible experience. I had the needle in my back for over an hour as there was so much fluid, it can only measure up to 40 and mine was above that ! They ended up only bringing it down to 19 which is still over the normal amount then I had to lay flat for four hours.

That experience itself was awful enough but I went on to lose my job as I was still very unwell. Ever since I have felt dizzy at times, sick very tired but I can't sleep. My eyes are bad but from today have got really bad again. My headaches have never gone and now are getting more painful and constant by the day. I'm on 1000 mg of acetazolomide a day . Have terrible heartburn and from today I've realised I'm getting reay bad again and need to go back to hospital.

It's scary as I know ill need another lumbar puncture but that won't be enough to control my fluid alone and the tablets don't seem to be doing much. Today I've felt awful and really lightheaded.

I know I need to go back to a and e and in the long run need a shunt but even though this has been hell and the future doesn't look very bright....

My friends are always happy to see me as I hide the pain I'm in and try to enjoy the little things . I go for short walks and in general don't do a lot. I love art and drawing and singing and try to do it when I feel well enough. This iih isn't something the neurologists can cure in a month or two it can take a long time. My quality of life has drastically deteriorated but I'm fighting hard to not let my spirit be affected too much .

Whenever I'm ill I try and think myself better, in this case it's serious and I can't but at least I am as happy as I can be putting all the awful pain and sickness in the back of my mind. A lot of doctors didnt believe a 19 year old they thought I was making it up or I just had a migraine but nope, I persisted and they eventually took me seriously.

Thankyou everyone for sharing your experiences it's put mine In perspective for me :)

Daisy, England , 19
Frogfaceflower Frogfaceflower
18-21, F
Jan 20, 2013