My name is Melody I have been diagnosed since February 2011. The docs have been great they have been moving kinda aggressively since I failed my field vision test and it showed I was loosing sight in my right eye. I am on the highest dose of medicine they can give me a day and they have said if this doesn't work I am looking at getting a shunt put in. I have been married for 24 years and this has been the most scarey thing my husband and I have been through. I also have 4 adult children and 2 grand children. I have found that most people around us don't understand what I am going through.

Hi Melody a very warm to the group. The fact your Doctors on top of this is a very good sign, and that they already have a treatment plan if the medication doesn't solve it shows that they know their stuff, which is always reassuring. It is scary because this condition comes out of nowhere, and you and your husbands reactions to it are underandable.

People tend to think of headaches like ours as just being a sort of migraine or something, and I think because IIH is something they haven't heard of they just think it's another kind of migraine or something like that. They look at you and you look the same, and they fail to realise it's a neurological condition, and unless it's a stroke you've had, they aren't going to see the effects.They will put down your word mixups, and forgetfulness, as just one of those things, and your knowcking into things or being unco ordinated as being clumsy.

However, those closest to you, who know you best and have taken time to ask and listen to what the doctors have told you, will be more understanding, as well as worried. Which is why we have put a guidesheet together to help you to explain your condition to people,, and you will find it in the helpful printouts in the recommended for you section.

It would also help if you print off these pages and give them to who you need to, such as friends,family, diability etc.

This information is from the IH Research Foundation, who have been researching this condition for 10 years, and who have the most thorough and up to date information. They are the only non profit group in the world researching IIH. Here is the libnk that takes you to our links for these pages.
Information you need

Does your husband go to all your appointments with you? It would be a good idea to take him if he hasn't, because then he will be able to hear first hand, and be able to ask any questions that he might have and his concerns. My husband has gone to all of mine with me since I had my first shunt. I always went on my own to my appointments and lumbar punctures, but now he comes with me, so that he can ask questions and things that I wouldn't have thought of. It also helps you to be a team with the IIH, as you and he become more familiar with the symptoms, he will as well as you be able to recognise the signs if you have a bad day, or if you deteriorate. It will also become less scary to him, especially when he has as much information and imput as you do from and with the doctors.

I know at the moment you are both just coming to terms with it all, and it might not have fully sunk in yet, but what it boils down to is change and compromise in your day to day life on how you do and manage the everyday stuff, such as work, housework, social life and so on. You are still you, and you must remember that, and hopefully the medication will do it's job and you can stabilise and function better again.

If you do need a shunt in the end, again that will help you to function better once your body adjusts to it, but of course that's something we can discuss on another topic. Feel free to ask as much as you need, even vent as much as you want, that's what we're here for.