Hello aimhigh4once,

IIH is a rare disease, it's not exactly a diagnosis that medical professionals are passing out on a daily basis. When I first began showing symptoms, no one believed me either. I ended up in the emergency department only to be diagnosed with migraines with aura (because at that point, my vision was already failing). It wasn't until my vision became doubled, that someone finally took notice. At that point, I'd already researched my symptoms enough that I knew I either had a brain tumor or IIH. I told my primary care physician my thoughts about what it could be and she immediately sent me to an ophthalmologist. Within moments of looking into my eyes, he confirmed my suspicions, I most likely had IIH. He was able to set the plan in motion and inform others of the likely diagnosis, by the end of that day, it was official, I had IIH.

-Amethyst

I am in the UK and its different here, we wait months for a specialist doctors appointment because the service is free but the waiting lists are long. so I am waiting until June to see the IIH specialist - in the mean time my old neurologist who believed that i had migraines more then i had IIH had told the GP that the max dose of diamox was 1g/day and i was suffering terribly with uncontrolled pressure as that dose was not sufficient. I had to do my own research and go to the GP (family doctor) and convince them to let me take the more diamox against the old neurologists express advice - not easy!! needless to say i wont go back to that old neurologist. as soon as i got up to 1.5g diamox and 100g topamax per day I was much better.
the old neurologist just didnt know much about IIH, and he thought i had migraines because my pain was often 1 sided. I ended up having to do my own research and push my own treatment. hopefully it will be better once i get to the specialist in June. it really just depends what doctors you get.

We are lucky here to have a lot of people with either medical backgrounds or willingness to do research or different experiences. Many people have done the work with trial and error on different diets and exclusions and chemical sensitivities, or complied research or nitrates or drug types or hormones, everything from relaxation techniques to CBT to medical marijuana. There is a symptom database and people are happy to share information and even advice on good doctors (for those of us in the USA who can pick and chose), its still a very individual disease but together we end up being as much experts as some you find out there (well we do have a vested interest!), so I hope i didnt paint too glum a picture before, there is a lot of knowledge here too.

Yeah, I hear you...hindsight is 20/20 though. The pulsatile tinnitus SHOULD be a red flag, but in the context of headache and dizziness which probably half of patients complain of, it's just hard for a non-neurologist or ophthalmologist to catch. Not that they SHOULDN"T catch it, it's just that it's only diagnosed in 1 -2 out of every 100,000 people. So for what it's worth, I bet the majority of people on this website complained of symptoms for awhile before it was figured out. It's frustrating for sure! But to be honest I wouldn't hold it against a family practice doc for missing such a rare diagnosis. So glad you figured out you needed to see an eye doc!

thank you everyone for the responses. You are all a great help :D