Hi Clair and a very warm
to the group. I understand exactly what you're saying, and how frustrated and bewildered you are. We have written a Guide Leaflet that we hope helps our members who are newly diagnosed to understand life with IIH. Here is the link to it A Guide to IIH - A New Way of Life
IH is asscociated and has been found to be common among overweight women, which is why you have been advised to lose weight, as they may think that is what triggered it, so by losing the weight you could go into remission. No one knows exactly what causes IIH, but they have associated several factors that are common among sufferers.
As this is a neurological condition and not a physically visual one, the people around you wont understand, and there idea of a headache is no where near, what a headache cause by raised intracranial pressure is. To them a person with a headache just needs to pop a couple of painkillers and it's gone, but as this is to do with cerebral spinal fluid, which is raised, they don't understand that this puts pressure on the brain, eyes and causes stiff necks.
To make sure they understand exactly what this condition is, and that it is not to be taken lightly, you can either print off information from the IH Research Foundation website, or get them to go and read up on it there themselves.
The IH Research Foundation has been conduction research into this condition for ten years, and are a leading authority on this, so they have lots of information.
Visit their website at IH Research Foundation
I hope this helps, and please ask as many questions as you need, and we will help you all we can.