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 Sam diagnosed 2010

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taznq08
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PostSubject: Sam diagnosed 2010    Tue Mar 13, 2012 12:29 am

Hi All, My Name is Sam, I am from Far North Queensland Australia, I was told I had IIH after seeing my eye doctor who then referred me to an eye specialist who then admitted me into hospital for MRI and Lumbar Puncture, For nearly 2 years i have been in denial not wanting to admit that i am sick, till a few weeks ago thanks to a you tube video on IH, then things starting sinking in, my mum says yes finally!

I am now off work as i am a road traffic controller and standing in the heat is just way to much now, so a change in career I think, I would like to teach ppl how to do traffic control, headaches are bad most days, dizzy spells yuk feeling sick all the time off balance is another thing and my head wanting to explode, now waiting for the docs to get back in touch to see when i go in for my next lumbar puncture, on meds Diamox just got to love the pins and neddles from that and the amount of times i have to go to the loo and pain meds were great in hospital but now reliy on over the counter stuff, trying to get my self better and dealing with this is hard at times but i struggle on
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PostSubject: Re: Sam diagnosed 2010    Tue Mar 13, 2012 5:00 pm

Hi Sam hug a very warm welcome to the group and I am so glad you found us. It is indeed very hard getting to grips with IIH and having to admit that your life has to be lived a totally different way. You don't mention your pain medication and it might help to talk to your Doctor or Neuro about more effective pain relief.

We encourage you to keep a symptom log because this is not only a great help to your Doctors, but also to you, because you will be able to identify patterns as to when your symptoms are at their worst and at what times. Sufferers of IIH also suffer with their symptoms around the time of menstruation and bad weather, this is because we seem to be more sensitive than other people to menstrual and barometric migraines. IT might be helpful for you to have a read through our A-Z of Common Headaches Experienced with IIH

It also helps to figure out a pace that is comfortable for you when doing certain activities, and keeping a record of this much like the symptom log , again will be helpful to you, because it will help you adapt to ways of being able to do them and build up to doing more. So don't give up the idea of teaching traffic confrol because it could still be doable.

We have lots of helpful booklets both from us and the Brain and Spine Foundation, on various topics which you will find helpful. We are here to help and support you as much as we can, and we are a family and community here, with members who are more than happy to answer any questions and share experiences with you, and of course the Admin team are also here to support and help.

Always remember you aren't alone and if you need a rant or just a chat, please do so. That's why we're here.

Heidi
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BananasMom
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PostSubject: Re: Sam diagnosed 2010    Tue Mar 13, 2012 7:47 pm

Hi Sam! Welcome to the group! Very Happy We're glad you found us, and I hope you'll find lots of help and support from the folks around here. I can understand about being in denial after diagnosis ... it is so hard to come to terms with at first, realizing everything in your life basically is going to change.

I was diagnosed a little over two years ago myself and am also on Diamox. I've done really well with it, and am now on 1000 mg per day, though I started off at 1500 mg. I'm grateful I've been able to gradually decrease the dose, because the side effects are less for me now at this lower dose. What dose are you on?

Please don't hesitate to ask if you ever have questions, or as Heidi said, if you just need to vent. We've all been there and we're here for you! *hugs*
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taznq08
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PostSubject: Re: Sam diagnosed 2010    Wed Mar 14, 2012 1:23 am

Thank you for the warm welcome, I am going to go through the booklets and print of a couple,
I am on 1000mg of daimox a day and have been for 2 years now, so much information on here it is great
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