Hi there, I'm Jennifer and I am 28 years old.
I was diagnosed in May after afew months of suffering from headaches but did not question the headaches until I suffered from blurred vision so I got my eyes tested and the optician sent me to the hospital straight away. There the admitted me right away and I got a brain scan the following day followed by a lumbar puncture. As these both came back clear I was taken for another brain scan with the dye through me. This also came back clear but the doctors transferred me to another hospital and this is were I was diagnosed. I was told it was because of my weight. I was in hospital a further 6 days and had another 4 lumbar punctures to bring the pressure down. Finally it came down and they let me go home.
I continue to see the doctor at the hospital I was in and I was given the news last week that everything is heading on the right road and I was able to return to work after 18 weeks off work. Today was my first day back and it did go fine but I am exhausted. But I just couldn't stay off any longer, although it took about 10 weeks to recover I was seriously bored sitting about the house!
I'm on 1000mg of Diamox per day, I'm finding them ok, have the same side affects i.e fizzy drinks but they do make me run to the toilet more than I would like lol
I was diagnosed a month before my birthday and could not celebrate with a drink! I haven't had alcohol in about 5/6 months and now I keep wanting a drink but not too sure if I'm allowed on these tablets nor how it will make me feel.

I return to the hospital in January, I am hoping for more good news and its not got worse. As it is to do with my weight I have been on a diet and lost 2 stone so far but still got 4/5 stone to go to get to the weight I want to be at. I haven't suffered from any headaches either since I got the lumbar punctures but I am scared about getting one. I'm just glad I know a high pressure headache is really bad.
-Jennifer x

Hi Jennifer and a very warm to the group, I'm so glad you found us. you seem to have been on the usual diagnosis road many of us have been on, which I know will have been very frustrating and worrying, but it seems you are on the right track now, and well done for losing weight.



I know fizzy drinks can leave your mouth tasteing metallic with the Diamox, and of course make you go to the loo more as you say. Alcohol is ok as long as it is in moderation, remember to have an equal glass of water to it though, it does help stop you getting dehydrated which happens anyway with alcohol, but more so because of diuretics and Diamox.



I'm so glad that it looks like your IIH is stable and that as you may have identified weight as your trigger, you know that the more weight you lose the more likely remission is for you, so dont give up hope.



We have a helpful booklet from our Partner the Brain and Spine Foundation about ?Neurological conditions and fatigue that may be able to help you when it comes to work and things. A guide to coping with fatigue



We also have some other helpful booklets in our useful guides and printouts section that also offer advice and suggestions.



Heidi

Hi Heidi, thanks for the warm welcome

I'm definitely glad I came across this forum as there really isn't much information out there about IIH
I'm actually used to the metalically taste of Diet Coke (I only drink this fizzy drink) now and the tingling in my toes and finger tips. It's more needing the loo more is very annoying!
Thank you for the advice on alcohol, I'm not really a huge drinker anyway but with 2 of my friends 30th birthday's coming up in the next 2 months I would definitely like to raise a glass for them I think I will try afew in the house first so I know if it really affects me.

I have read online that everyone's symtoms are different and some peoples symtoms do just disappear so I will definitely continue with the weight loss

Also for the leaflet on work, I will have a read as soon as I finish this

Jennifer