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 Susan diagnosed 2008

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susan6

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PostSubject: Susan diagnosed 2008   Sun Nov 11, 2012 1:35 am

Hi All
I've been diagonised with IIH in 2008. I live in Ireland and don't seem to be able to find any support groups/information in Ireland. At the moment I am due to have another spinal tap. I have all the familar symptoms severe headaches, dizziness, tinnitus, fatigue and in the last few months have terrible pain and stiffiness in my legs making it difficult for me to walk. Has anyone experienced this symptom....
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Sophiasmom
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PostSubject: Re: Susan diagnosed 2008   Sun Nov 11, 2012 6:58 am

hi Susan;
I get sciatica sometimes which is pain down the back of the legs, sometimes just in the buttock, and it's associated with IIH. I also have pretty bad swelling in my lower legs, which has been associated with IIH in 77% of us. it makes my legs feel tight and stiff. when I get very stressed emotionally, I can become so weak that I can't stand up or walk. I think this must be what happens to me when my ICP goes really high.
I hope that helps. good luck with your LP, I hope it helps you feel better. I know I have seen others from Ireland on this site so maybe you can connect with someone here?
Deb
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susan6

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PostSubject: Re: Susan diagnosed 2008   Sun Nov 11, 2012 1:09 pm

Hi Deb,
Thanks for the reply,its a relief to hear that this is a recognised symptom of iih.
i joined this network hoping to find out more about this condition as i had never heard of it and it will be good to hear from people who are living with this also.
Thanks
Susan
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morrise
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PostSubject: Re: Susan diagnosed 2008   Sun Nov 11, 2012 3:38 pm

Hi Susan, I'm from Ireland too Smile. There is no support groups here and not alot of information about the condition. Like yourself I found this website googling the condition. This has been a great support group for me with any questions that I've had. Its nice to have people who actually understand how we are feeling. What hospital are you attending?
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susan6

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PostSubject: Re: Susan diagnosed 2008   Tue Nov 13, 2012 8:01 am

Hi Morrise, I am attending St James hospital,Iwas diagnosed four years ago but have suffered with headaches as long as i can remember and even tough my last csf was low the last time,I still suffered with the symptoms, have you found any thing that has helped you.
Susan
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Heidi
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PostSubject: Re: Susan diagnosed 2008   Tue Nov 13, 2012 1:03 pm

Hi Susan, a very warm welcome to the group, as the other ladies have said, pain and stiffness in your legs is experienced and could be caused either by high pressure and sciatica. I'd talk to your doctor about it because he may prescribe an anti inflammatory for it, if you are able to have them. In the meantime you could try either a heatpad or electric blanket round your legs to help ease the pain, a hotwater bottle is just as effective.

I'm so pleased you found us, and you will gets lots of support. We have lots of information and lots of helpful booklets. We have symptom and medication log sheets, which we encourage you to keep, as they will help your doctor know and understand what it's been like for you, between appointments.

Our group huddle not only there for questions and sharing experiences, but to also to give you a forum to have a good rant when you need one. If you have any problems let any of the Admin or Moderator team know.

Heidi xx
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