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 Vanessa - diagnosed 2010 - i live with I.I.H

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PostSubject: Vanessa - diagnosed 2010 - i live with I.I.H   Wed May 25, 2011 9:28 pm

Hi my name is Vanessa i live in wales i was diognsed with ih July 2010. My symptoms are horrendous headaches that feel like my skull is going to explode , loss of balance which is not nice when im out because people that don't no me think i must be drunk and look at me stupid, lack of depth perception (eg judging depth of steps), spots in eyes or blurred vision,sickness, tinnitus, pain behind my eyes and light sensitive where most of the time i sit in the house in darkness or i have my sunglasses on i also suffer when i cough or sneeze as my head feels like it popped my list of symptoms could goes on.
i have had many lumber puncher since i was diagnosed my highest pressure was 45 my latest lumber puncher was 2 1/2 weeks ago and that was the worst one i have had it left me bed bound until 3 days ago i could not move my neck and body was in so much pain i was given Tramadol which only took a little bit of the pain away.

This condition has really effected my every day life and it has also effected my childrens and partner as they see me in so much pain all the time. i have had to give up my studies in collage because i could not cope with my studies and the pain i go through i live my life day to day now as i do not no wot tomorrow brings as weather i will be up and about or left to suffer in bed all day some days i think is it worth carrying on

The medication i am taken now are diamox @ 1000mg a day and furosemide @ 40mg a day ........ i was also taking another tablet called topiramate @100mg a day but this was taken of me 3 months ago as the effect where so bad that i had no control over my body and i felt so out of it.
i am now awaiting on news to have a shunt inserted.

Apart from this condition i also suffer with servere asthma,benign tumor in right femur, pernicious anemia and depression.

some times i just wish i had some one to talk to about this because nobody knows what it is like unless they are living with it and they no the pain that i and other go through all the time.

i wish there was a cure for this condition

for reading

vanessa xx
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PostSubject: Re: Vanessa - diagnosed 2010 - i live with I.I.H   Wed May 25, 2011 10:19 pm

Hi Vanessa and a warm to the group. I understand exactly where you're coming from and I know how frustrated and low you must feel. It is very hard to come to terms with all the symptoms of IIH and how it affects your everyday life and emotions. It's especially hard for families, more so when you have young children who don't understand why Mummy is poorly, and you want to protect them too so that they don't worry.

You have a lot going on with the asthma, benign tumour and pernicious anaemia, so it is understandable that you are depressed, it would be hard not to be. I myself suffered from severe depression 10 years ago after my first shunt, but that wasn't just down to the surgery but more because there were so many things to deal with, I couldn't concentrate on my recovery. So you aren't alone with feeling like you do, because at some point we all go through it.

Dealing one day at a time, is the right attitude to have, and I would recommend that sufferers do that. Hopefully when you have your shunt, you will start to notice a vast improvement and will be able to function a lot better. IT might not happen over night because your body has to get used to the shunt, but it will happen.

We have some guidesheets that I would like you to read, you can download them and print them off too, and give them to your partner, family and friends. They were written by myself based on my 20 plus years experience with IIH, and hopefully you will find them a big help.

Here is the link to them Useful guides and printouts

We are here to help and support you whenever you need us, and you can PM me anytime, and if you would like a one to one chat with me in the chatbox when we are on here together, let me know and I will come and have a chat with you. Remember you are not on your own, and you are now with people who understand and know what you're going through.

Last edited by Heidi on Wed May 25, 2011 11:50 pm; edited 2 times in total
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PostSubject: Re: Vanessa - diagnosed 2010 - i live with I.I.H   Wed May 25, 2011 11:11 pm

im so greatful that i have found this site least i no im not alone now as i do not no any one that has this condition my GP did not no what this was when i come out of hospital and i gave him the latter from the hospital he was asking me what it was and to explain to him
thank you again

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