I have always had migraines, I assumed what I had was another one. It lasted about two weeks, I started to get very bad tinnitus and eventually my peripheral vision started to go.
I went to a&e and they did some Neuro checks and looked in my eyes and the dr got all excited and said he hadn't "caught" one of these before. Got admitted and had a CT, MRI etc, eventually had a lumbar puncture and pressure was 60+ (each tube goes up to 30 and they had put two on, it shot out of the top). After diagnosis it was a couple of weeks of medications and lumbar punctures and a fairly impressive leak which resulted in a readmission and a blood patch to fix it. In the first couple of years after diagnosis I had around 20 LP's.
I've had it about 6/7 years now and have found an approach that works. I have a lumbar puncture, am medication free until I feel symptoms and then I start taking acetazolamide, first one a day until symptoms come back, then two, then three etc. I've found I can stretch out the lumber punctures to roughly one every 6-12 months this way. I've also found that I have a 'limit' to how much medication I can tolerate before I turn into a melted ice cream, any more than 4/5 a day and I start to not function properly, sleeping a lot, memory loss etc.
I've chosen not to have surgery yet and treat it as a worst case scenario. LP shunts which drain from your lumbar space into your stomach have a high rate of needing follow up surgeries and VP shunts which drain from your brain to stomach is another undertaking, I am very wary of brain surgery if I can avoid it, plus you have to surrender your driving licence until your neurologist clears you (around 6 months) and I can't afford to do that!
Like previous posters have said, dedicated forum boards are a difficult place to be. They tend to only have people who are suffering a lot (or like to talk about suffering a lot) and its quite a gloomy place to be. They're occasionally handy for asking questions but often the advice isn't correct and people have so many other things going on health wise that what works for one doesn't for another.
I was originally told it was weight related, and was asked to lose weight. However the evidence is extremely unclear (otherwise it wouldn't be idiopathic) and I had a good neurologist for a year or two who worked out that mine was highly probably hormone related. I went on the pill at 14, then the implant and 18, implant removed, had a baby, breastfed and then 6 months after breastfeeding I developed IIH. He explained it may have something to do with my body not actually having had a natural hormone level from puberty. It makes sense as I now take no contraception and am heavier than I was before and for the first time in my life I have a clockwork menstrual cycle and I'm going longer between LP's/taking less medication for longer.