Hello, I was diagonesed with IH in Feb 2010, I have had it for over a year now. I had a LP shunt placed in August 2010 and it was working just fine until 2 weeks ago. All of my symptoms have since come back, I got it adjusted last week and it is helping a little bit. I feel like no one understands how "we" feel and that we just have a headache and "we" need to stop complaining and get on with it. I am so frustrated. I have famiiy members that don't even believe that I am sick but I was in and out of the ER so much in 2010 that one of the ER nurses knew my name and knew what I was going in there for. I am one of the most compassionate caring people that you will ever meet I love everyone but since getting this IH I have turned mean and angry and that is not how I want to be. I have two kids to take care of my daughter is 6 and my son is 17 months and it's hard when your sick and your trying your best to do what needs to be done but sometimes it's just too much, my husband is helpful but sometimes I think that he is tired of it too. I try not too complain but when you have a constant headache, ear ringing, pain in the back of head and you feel like your going to throw up most of the time most people that have never experienced this would think they were dying or have the flu. I'm sorry to vent and complain I just had too get this out! Have a wonderful day too you all!
BTW I LOVE THIS WEBSITE WHOEVER THOUGHT OF IT IS TRULY AN ANGEL!!

Lilly,you just go ahead and vent as much as you like, that's why we're here . I know exactly what you mean, it does make you feel very angry at times, I thibnk becauser you neverk now if you're going to have a good day or not, and when you don't you feel cheated. the other thing is your toleration level totally drops, and the smallest sound or just everyday stuff, can just unleash the frustrations. I still get like that myself.

You see most people when you say headache, just think you can take a few pills and it'll go, because theirs does, they don't fully understand that when it's intracranial pressure, it sometimes takes a bit more than a couple of pills. If you were walking about with a bandage round your head, they would sympathise more, because they can SEE you have something wrong with your head.

It's a case of the 3 monkeys with thrm, see nothing, hear nothing, say nothing most of the time, instead of asking you about what is really going on, and why. As for your husband, he is probably feeling pretty useless because he can't do anything to make you better, my husband was a little like that too, although he is well trained now I can tell you.If he can, get him to go to your appointments with you, so that when your doctor is discussing your IIH with you, your husband hears first hand, the same as you. If he has any questions he can ask them. I make sure my husband has gone to all mine, and now he knows when I'm haviing a bad day without me telling him, and is a lot more sympathetic.

It takes time to come to terms with IIH, because everything becomes a learning process all over again, and is full of changes and compromises, but eventually things will get better, and as time passes, you'll have adapted your routines and lifestyle, so that IIH becomes more bearable to live with.

Defintely have hubby go to your appointments with you though, because he has to also adapt to living with IIH, because as my husband always says to me, it's not just my illness, it's his as well because we're a team. That's what you have to be, a team.

Never apologise for venting here, it's better to get your frustrations and everything out, than to let it simmer away, because it affects not only your moods, but your headaches too because stress headache just adds to it all, and you don't want one of those to boot unless you can help it.


I am so pleased that you joined us, and that you like this website, and I hope we can help you have a better IIH life.