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 Alynn - Diagnosed in 2004

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PostSubject: Alynn - Diagnosed in 2004    Tue Jun 30, 2009 9:05 pm

Hi everyone!

I was diagnosed back in 2004. I had been dealing with "migraines" since I was 15. My doctors were quick to prescribe me different migraine meds. Finally, back in 2004 I went for a routine eye exam and there it was. My optic nerve was raised and I was told to go see a neurologist.

Since then it has been a series of LPs every few months. My body doesn't respond to medications. I am now seeing a neurosurgeon about have a shunt put in my head. Im absolutely terrified but I keep my game face on for my husband. I don't want him to worry more then he does now.

My vision has gotten bad recently. I can't bend over, move my head too quickly or even sneeze without losing vision in my right eye completely for about 20 seconds.

I am glad to have come across this site. It's a common misconception that I have some occasional headaches which aggravates me. It is just nice to know I have someone to talk to!! Thanks!!

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PostSubject: Re: Alynn - Diagnosed in 2004    Fri Jul 03, 2009 10:22 am

Hello Amamda and a big welcome! :cheers:

I'm glad you have found us, we are a new small friendly site with one common goal and that is to support each other and help others to 'live' with IH.

I was only diagnosed in Nov '07 so it still all quite new but I have been through so much in that time. I've had 6 surgeries so far one of them being having a VP shunt fitted within days of being diagnosed. (Quite a shock) But I'm glad I have it now and I have learned to become attached (LOL in every way!!) It saved my life and if any surgeon said they were ever going to remove it I'd fight to keep it now.

So although its a daunting prospect of having it fitted and it took me a while to get used to it. I would not have it any other way now!!

Feel free to ask me any questions and I will answer them as honesly as I can. Heidi who is also usually here every day is unwell at the moment (broken leg!!) but she also has a VP shunt! She is a welth of knowledge.

One or both of us usually come here every day to check out any posts and reply to messages, so as I said feel free to ask questions. x

From Charlie
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PostSubject: Re: Alynn - Diagnosed in 2004    Mon Oct 05, 2009 1:52 pm

Hi Amanda :cheers: A very big and belated welcome to our group. I so know where you're coming from, I too put a big game face on for my husband initially, but since coming to all my appointments with me, he's been able to ask questions, that I wouldn't have thought of from his perspective, and he's become as knowledgable as I am now, which is a big help. The one thing he's always told me, is that it isn't just my illness, it's his too and we have to always talk about it together and not bottle things up about it. I was so busy trying to hide my emotions about the surgeries and my fears, that it never dawned on me he had some of his own. He too is a member on this site, and I'm sure if your husband has any questions about how to handle it from his point of view he would be more than happy to answer them, and of course I'm here with Charlie to answer any and all of yours. So please dont hesitate and dont be a stranger, we're always here when you need us for any reason. ☀

Luv Heidi XXX
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Christy Savage

PostSubject: Re: Alynn - Diagnosed in 2004    Wed Mar 24, 2010 11:57 am

Hi Amanda,

I can sympathise with how your feeling also. I had an VP strata shunt fitted nearly four years ago and I remember having the same fears as you.

I am one of the lucky ones who had very sucessful surgery with very little problems since then, but that doesnt make what we go through any less daunting.

All of us would have felt that way at sometime because of this disease and you need to know that you are not alone and there is help and good people like the ladies who run this site and of course the members too who are doing their best to help others and are only too happy to be there for others.
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Alynn - Diagnosed in 2004

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