Hi Jess, and welcome to the forum! Unfortunately, your experience is not unusual. It does seem like they at least have you on the right track for diagnosis and treatment now, but sorry you had to suffer and experience such poor service. We are definitely our own best advocates, and looks like you've got a handle on that part!
I'm sure the optician was talking about papilledema, which is a swelling of your optic nerve from increase fluid (pressure). That's why your vision has been affected and a possible symptom of IIH, but not necessary for diagnosis. Unfortunately, it can take some time to confirm diagnosis and receive appropriate treatment, so hang in there! If ophthalmologist confirms, you'll probably be scheduled for a spinal tap (LP)..that's how they measure your cerebral spinal fluid (pressure) levels. Then, to neurologist or neurosurgeon for treatment. There are medications such as Diamox, Topamax, and Lasix that can be used to reduce fluid levels. It honestly depends on what you're able to tolerate and how it affects your symptoms. Some members are able to manage with medications, others need more invasive solutions like optic nerve sheathing, stents, and shunts. Some people have just one episode of IIH and are fine once treated, others have recurring issues. Everyone is different, which makes diagnosis and treatment that much more difficult. Feel free to check out the site and ask us anything. We'll do our best to support and guide you through the process.
Losing weight has been known to help some members, but it's not universal. We always recommend members try to be as healthy as possible, but understand that symptoms can sometimes make that impossible. Many people find that some foods, for me anything processed, makes symptoms worse. You may want to start a symptom log..track symptoms, food, sleep, etc. Here's a sample from our Useful Booklets and Guides link in Living with IIH section. http://www.ihaveiih.com/t59-i-have-iih-symptom-log. There are also guides for talking with family, friends, specialists in that section that you may find helpful.
Some members find a little relief with ice pack to back of neck or across forehead/eyes, others do better with heat. I personally find a "sweet spot" laying on my side at 45-60 degree angle, propped up with pillows. It's mostly trial and error, but whatever helps! You may also find that straining, bending, or any exertion makes symptoms worse, so just be mindful.
This seems like a bunch of random information, but I hope it was helpful. Let us know if you have any further questions and keep us posted on your progress.
Take care,
Julie