[b] Hello My name is Marlana. I was diagnosised on December 15, 2011. I have been suffering with this condition for over 8 years and was misdiagnosised. I am currently unable to work but I was a nurse before this took me out. I got diagnosised 6 months after I had my daughter. She was born 2 months early. I had migraines my whole pregnancy. I am currently taking diamox 2 grams and elavil. I have not experienced any relief. I go to the er 4 -5 times a month for pain and headaches. I experience black or gray out vision, stiff neck, i have no perphial visiob, and i have debilitating migraines. I spend days at a time in bed. My family and fiance help me greatly. I have found support on twitter and facebook. I feel so alone at times. m sorry if I was rambling.

Hello Marlana and

As a nurse you may have a different understanding than most of us here, we just know that we hurt!!
You mentioned some serious issues with your eyesight. What has your Ophthalmologist suggested? With your vision at risk I would think your docs would already be talking surgery. Have you had any relief after getting a lp? If you have, perhaps a shunt might be in order. But there are other surgeries that can be done to protect your eyes. I hope you have been pushing your docs for that.

Do not hesitant to come on board and let your hair down. We understand all too well how having IIH can change your life, so feel free to speak here.

How lucky for you to have such an understanding fiance and a wonderful little one too.

Hello Marlana and to the group!

I'm sorry that your having such a hard time and can't find any relief
If your having problems with your eye sight I would suggest talking to your Ophthalmologist they might be able to suggest a form of treatment to help save your eye sight, check out our guide to talking to your Neuro-Ophthalmologist http://www.ihaveiih.com/t580-i-have-iih-guide-talking-to-your-neuro-ophthalmologist

Have you tried pain medication to help? Have a look at other IHers suggestions of what helps but remember to talk over with your doctor before trying any new medication's. http://www.ihaveiih.com/t636-has-anyone-tried-pain-med-combo-it-works

I understand how you feel about being affected during your pregnancy and having to give up work I was affected during my pregnancy, gave up work and was unable to look after my son but it does get better. Once they are able to work out a form of treatment to manage your IIH be that medication or surgery things will get easier.

Its great that your finace is there for, if he wants to talk or needs support too we have a section for family xxx

Hello Marlana!

Welcome to the Forums!

I, too, am a nurse. Or rather, I was. Just like you, IH took me out of the game. So I understand how you may be feeling about that. I lost all my own peripheral vision and my driver's license... have a son, who is 8, going on 9. I only got diagnosed after years and years of misery, in 2010, and it's not been an easy road at all, I spend most of my days in bed, too, even though I hate doing it! I hope, that here at the forums, you find the information you need, and kinship and support to help you smile every day. Please, feel free to ask questions or lean on us... that's what we're here for!



Crissy