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 Nicky diagnosed 2003/2004

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nicky
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PostSubject: Nicky diagnosed 2003/2004   Wed Jun 08, 2011 9:41 pm

Hi everyone

I am so excited to have found such a wonderful forum ,iih can often be a lonely disease and its wonderful to talk to people who understand.

My story is similar to many peoples here .Ive had iih for eight years.five of those years I went from doctor to doctor desperate for help .Most often i was diagnosed with stress or tention headaches .Eventually i gave up and spent most my time curled up in bed in pain <my poor husband besides himself with worry and frustration . Then 3 years ago i woke up and literally couldnt see .It felt like it had happened over night but im sure I had been slowly loosing my vision over a couple of months but because i was so tired and sore didnt notice.Loosing my vision was a life saver though .I was sent to the most wonderful neurosurgeon who admitted me to hospital immediately .First he tried lps for a couple of days but there was no improvement and we eventually decided to go ahead with a lp shunt .thankfully the op was succesful and my vision returned within a week .

My life has changed somewhat since then .To be honest i thought the shunt was a cure and it has taken me awhile to accept its just a wonderful tool to help but you will still have bad days and you will still have headaches.Ive also changed my way of life , I simply cannot work a full day because i end up in huge amounts of pain if i do so I have found a wonderful half day job .I have two wonderful children who understand that sometimes i just need down time so im lucky .My next step is to try eat a more healthy diet and loose some weight .In the last 3 years i have done nothing regarding the weight issues as my neuro feels it has nothing to do with the iih but theres no harm in trying !

For all the people recently diagnosed it does get better with the right medical care ,as much information as possible,and small changes in your life to make you more comfortable .I also try not to let the disease define who I am anymore-you have iih but you are not iih !


Nicky
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Heidi
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PostSubject: Re: Nicky diagnosed 2003/2004   Wed Jun 08, 2011 10:16 pm

Hi Nicky and a very warm to the group. What a time you and your husband have had, and it must have been so frustrating and upsetting for you both. hug It's funny isn't it how we think that the shunt will put everything back to normal the way it was, and although it does help quite a bit, things bnever go back to being quite the same. Which is why we try to help you to adapt to doing things differently, and build your confidence back up.

I don't think a non sufferer realises just how much this illness can take from you, not just physically but emotionally too. We go from being healthy and active to the complete opposite without warning.

I'm so pleased that your vision was saved and that you still have a positive attitude and that is such a good thing. I too have the bad and good days and I have a VP shunt and subtemporal decompressions and the medication LOL, but, and this is a big but, they are no where near as many bad days as there used to be, there are far more good days and I am thankful for my Neurosurgeon for giving them to me.

You are indeed a success story and an inspiration to many Nicky
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PostSubject: Re: Nicky diagnosed 2003/2004   Sun Jun 12, 2011 8:37 pm

I think often the doctors tend to tell us that once you have a shunt everything will be alright.It can come as quite a shock when you get that first headache and very scary as you imagine the absolute worse !

On friday after writing this post we had some severe weather changes and i really battled to get myself out of bed and off to work.Half way to work the tears started flowing and didnt stop .I think years of pent up frustration at my body letting me down came out but the difference was I could log in here and read all the stories and for once didnt feel so alone !
So thank you Heidi for a wonderful site Smile
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PostSubject: Re: Nicky diagnosed 2003/2004   Sun Jun 12, 2011 10:39 pm

I know the shock is something that lasts for quite a while. You are relieved when you find out it's not something sinister like a brain tumour, but then that relief is short lived when they tell you that IIH is incurable and what the options are.

For the bad weather headaches, an ioniser of humidifier might help this site tells you more about barometric headaches, which are what you are experiencing in the bad weather Barometric Headaches , I think we suffer wuith them more severely because of raised CSF and the IIH.

We are always here for you, and you can come and have a good rant too, I thiknk a good rant always helps and we will understand and support you regardless. hug
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PostSubject: Re: Nicky diagnosed 2003/2004   Mon Jun 13, 2011 12:14 am

[/i]Hi Nicky,

I know how scary it is to be in so much pain and to loose your eye sight and have no-one take it seriously, if it wasn't for the neurologist thinking I had MS I would have never been diagnosed with IH. I'm glad that a LP shunt has worked for you as I know many that it hasn't.

I look forward to chatting with you more xx
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nicky
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PostSubject: Re: Nicky diagnosed 2003/2004   Mon Jun 13, 2011 9:08 pm

thank you
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