Idiopathic Intercranial Hypertension (IIH) and Migraines

Hi
I know how difficult it is when we're confronted with a possible new diagnosis, please try not to freak out too much. Did the neurologist say what the next steps would be and would you mind sharing some of these new symptoms? I hope I'm not being too invasive.

I have (I'm think I'm in remission at the moment) IIH. which was confirmed with a spinal tap. In fact I've had a few spinal taps to lower the spinal fluid that doesn't seem to absorb as it should. They were a bit scary, but were done by a provider who frequently does them. I was put on Diamox, which is often used to treat IH, but I didn't do well with it and switched methazolamide, which I did find to be beneficial.

I've seen an ophthalmologist (and see this doctor every six months for another issue), a neuro-ophthalmologist, in addition to the neurologist who diagnosed me with IH. I have lost just over 40 lbs and am less symptomatic when it comes to IH. Of course this doesn't mean everyone with IH needs to lose weight. I did overhead my doctor at the time say something along the line of the 4 F's - forty, fair, fat, fertile saying I fit the bill. I was less than happy overhearing this to say the least.

I did find this information from the National Eye Institute I hope is beneficial; https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/idiopathic-intracranial-hypertension

Please keep us posted on how you are doing and all the positive vibes heading your way, Nancy Harris Bonk, Patient Leader/Moderator (team member)