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 Elaine Diagnosed May 10

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morrise
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PostSubject: Elaine Diagnosed May 10   Thu Nov 03, 2011 5:37 pm

Hi,

My name is Elaine I'm 29 years of age and I am from Dublin, Ireland. I was diagnosed in May 2010. In Dec 2009 I had a slipped disc removed from my neck when I started to feel better from that I started getting the headaches and blurred vision I actually convinced myself that I was just looking for something to be wrong with me as my neck was getting better, How wrong was I. After 3 weeks of headaches and my vision getting bad I got it checked out. I got a Ct Scan and lumbar puncture which was 35. I am a heathy weight and that I am one of the few that gets this that is not overweight. I was put on Diamox and sent home, they never explained the side effects of these tablets to me but I learned soon enough. The first few weeks were the hardest I know I went through a bout of depression cause I could never see an end to it and ye just wish to go a sleep and never wake up. I had great support from my partner. I think my friends and family just thought its a headache get over it!!. I was lucky and only had this condition for 6 months and was over it in Dec 2010.

Over the last few weeks I've had headaches and just put them down to migranes but at the weekend my vision was blurry so I knew straight away it was back. I went back the hospital and they confirmed that it is. Had a lumbar Puncture it was 33 they did say I've caught it early and will only need to go on a diamox for a few months hopefully. I've had an awful headache since the lumbar puncture and just hope it will pass soon. Its mad how quick ye forget what the experience is like. But I am going stay positive about it and I know it will pass soon.

Is there many other people that have got this back after it has gone? If so how long between each time it occurs.
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PostSubject: Re: Elaine Diagnosed May 10   Thu Nov 03, 2011 6:05 pm

Hi Elaine and a warm welcome to the group. hug I totally understand the journey you've had with your IIH, I too started with it while pregnant, but soon got my figure back afterwards yet still had it. I now know it's triggered by my hormones.

I actually managed remission for 6 years, and at first when it came back I just put it down to working hard, that is until I needed a lumbar puncture. It's a bit of a shock when it comes back, you're right when you say how you forget the experience of having it, you get so used to being normal.

It sounds like you could have a low pressure headache, is it better when you lay down, does it make you feel nauseous and like you want to be sick?

The best thing to do is to lie down flat, drink plenty of fluids and caffeine and rest and take pain relief when you feel you need it. Hopefully it should settle down, but if it doesn't get your doctor to come and see you. Sometimes they will do blood patches to help relieve the headache and symptoms.

Hope this helps.

Heidi
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PostSubject: Re: Elaine Diagnosed May 10   Tue Nov 08, 2011 6:22 pm

Hi Elaine..sorry to hear you're dealing w/ headaches again. I was originally diagnosed and treated w/ Diamox. My symptoms subsided and I was ok for several months. I had a hysterectomy and everything came back w/ a vengeance. I had more pain the second time and didn't respond to meds, so ended up w/ a lumbar shunt. I've had it for about 10 years now. I have ups and downs, but definitely better than before the shunt. I hope the doctors figure it out and you find some relief soon!!

Take care,
Julie

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