Share Your Experiences with IIH/Pseudotumor Cerebri

I was diagnosed last year in August, as a long-term treatment my Nuro ophthalmologist suggested weight loss surgery. I was sleeved the following October. and although I have lost a significant amount of weight I started to have really bad migraines again a few weeks ago. They were under control since last year and then out of nowhere they came back. When I was diagnosed I had 2 lumbar punctures to drain the fluid from my brain. I am grateful to not have any of the other symptoms that I was having because this condition caused me to have papilledema as well but I don’t wish these migraines on my worst enemy! I was hospitalized for a week and put on very strong meds because the migraines are almost unbearable.

Right side tinnitus that was initially thought to be related to hearing loss. Then came headaches that felt like my head was burning from the inside. A bunch of imaging led to an official diagnosis. I started Acetazolamide. It helps decrease the frequency and intensity of the headaches. Tinnitus is still present with small moments where it stores. At this point, the tinnitus has become my normal, so it’s weird when it stops. TLDR: right side tinnitus, horrible headaches, bunch of tests, diagnosis, med helps, tinnitus still here

I was only diagnosed with chronic migraine disorder for 4 years before figuring out that i had two blood clots in my brain, which we think then caused me to have IIH. i would have a migraine 24/7. but my specific symptoms of IIH are loss of peripheral vision, weakness, excruciating migraine, stiff and sore neck, & tiredness

I had terrible headaches to the point I would sleep for days it hurt so bad I was referred to a neurologist and they took a mri and found out I had excess fluid on my brain I have had 3 spinal taps/lumbar punctures to remove the fluid and I have medication I take that helps so I don’t have to have as many!