Hi, my name is Chrissy and I have very recently been diagnosed with IIH.. I went to the doctors complaining of dizzy spells and palpitations, and after a week of tests was given this diagnosis.
I can't fault the care that I was given at the hospital, but am still a shell shocked. At the moment I am waiting for a date to see a Neurologist, where I am hoping a little more information will be forth coming.
It is good to see that there are other people with the same illness, I had never heard of it and nobody I have spoken to has either. I can't help but wonder if some think I'm making it up :(

Hi Chrissy, welcome to the group! I think people do have a difficult time understanding IIH because it's rare and we don't tend to look sick. Education and advocacy are very important, so check out the Useful Guides and Print Outs for more information and suggestions. You can probably find the most current information at www.ihrfoundation.org. The diagnosis and treatment process can be long and frustrating, so I'm glad you found us. Please let us know if you have any questions, concerns, or just need a good rant..we'll do our best to support you through it!


Julie

Hi Chrissy and a warm welcome to the group. It always makes it harder to adjust to IIH when others are looking at you as if you've just invented it from nowhere. However, you haven't and you can infact tell them although it's rare it has been around for over a 100 years or more. We have lots of information and booklets, and you might want to print some of it off or share it with them so that they can read up on it for themselves.

It's funny how people can have allsorts of ailments and no one questions them about it, but yet tell them you have a neurological condition they've not heard of and they do.

Hi Chrissy, welcome to the group.
People thought I was making it up too, it took months for any doctor to listen to me.. or just ANYONE to listen to me, even when I was diagnosed people looked at me like I was (and still am) talking utter nonsense, so I can relate to how you feel.

HI, all for you replies. Sorry it has taken me a while to respond, but as I explained in my other post, it has all been very confusing for me. So many mixed messages. People still look at me like I'm odd, so I've given up telling them. Especially after what happened at the Neurologists. Hope you are all doing well though x

Hi Chrissy,
I totally understand where you are coming from. I had a psychiatrist tell my insurance company (before diagnoses) that there is nothing sinister happening within me! One month later I was rushed to hospital and had my first surgery. It is really hard to tell someone what you are going through, when they are not living it! My comparison is would you treat a person with MS (a neurological disease) the same way?
It does get easier, when you start to learn about the disease! Also stay positive, it's a lifesaver!