Hello all! I am a new member, and newly diagnosed with IIH. I lived with all the symptoms for close to a year, and like a lot of folks, went to multiple doctors before being told by the Opthamologist that I have Papilledema, and then confirmed the diagnosis with my neuro. Either of these two doctors though seem to be very concerned, as my Ophthalmologist told me when I began to panic with the news, that it was no big deal, and after taking some pills for a few months or so, it will go away, and I will be a new woman in 2018. I had a visual field test done the day I was diagnosed, 2 months ago. Was told I have a large blind spot in my left eye. I went in again last week, where she only looked at my eyes, said the swelling has gone down a bit, see you in 6 months, and by then, you should be fine. I told her of all the eye anomalies I still see, and of the aching pain in my eyes. I told her my eyes blur when focusing on something, and light causes extreme pain in my eyes, and head. She said they will do another visual field test in 6 months. My neuro has yet to actually make time to sit down with me and tell me about IIH. I had to call his office on the phone to ask what to do after seeing the Opthamologist, and he called me in DIamox. I insisted on an appointment, and they fit me in almost 3 months after diagnosis...geese. Anyway, I guess after my own research, I am most concerned with my eyes. How often does one usually get seen by the Ophthalmologist with Papilledema?  Thanks for reading, and any advice or wisdom you can give.

Welcome to the forum! The responses from your physicians seem really dismissive and unsupportive, so I'm glad you found us. Sure, there are people that have one episode of IIH that resolves with medication, but others struggle with the condition throughout their lives.

Unfortunately, IIH seems to affect everyone a little differently and visual fields vary depending on the severity of your vision loss. I get a visual field with every appointment, but I see a neuro-ophthalmologist so it may be different. I've also had IIH for a couple decades, so only seeing him every 6 months at this point. There were times in the beginning that I saw him weekly, but I had a lot of vision loss at that point. It can take some time to find the correct dosage or treatment, but I would think they'd be more diligent unless your loss has stabilized.

You may consider asking the neurologist or ophthalmologist for a referral for a neuro-ophthalmologist in your area. Neurologists can treat symptoms of neurological disorders and ophthalmologists deal with conditions of the eye, while neuro-ophthalmologist treat neurological conditions that cause issues with your eyes so more comprehensive.

Diamox is a typical medication used for IIH, but they can adjust the dosage and add other medications if you're still having symptoms. It's good that the swelling has gone down, but that doesn't mean your vision has improved or headaches improved. You can have IIH with or without papilledema, so they need to monitor your vision regardless. I'm just concerned because it doesn't seem like they're very invested in your care, but maybe your face-to-face with neurologist will be more helpful.

Keep us posted, and take care!
Julie

Thank you Julie, I will do that, and ask about a neuro-opthamologist. Thank you very much.