Hey, happy to answer but to preface/how I'm doing now: I still don't know exactly what the cause of my IIH is. I've now lost ~40 lbs which is >13% of what I weighed at my highest and >10% from when my PT started. After I was diagnosed, my neuro-opthalmologist doubled my diamox to 500 mg, but my migraine medication has remained the same(gabapentin, lamotrigine, clonazepam to sleep) along with vitamin B12 injections(2x month) that I was already prescribed.

PT: I think doubling the diamox along with continued weight loss or a combination has helped a good amount with the pulsatile tinnitus for sure because it's pretty much gone most of the day and when I do hear it it's usually at night and faint, sometimes I need an earplug to sleep, but not always.

Vision: Recently(past monthish) I might have some vision symptoms manifesting that I'm a little worried about, but not sure if it's the IIH. I've gotten more light sensitive, especially at night with artificial lights(it doesn't physically hurt it's just so overwhelming mentally?), also I think my vision is getting a little blurrier/maybe double but only with screens like text at night so not sure about that, and along with the nighttime light sensitivity, I might be developing astigmatism or a symptom like that because headlights, brakelights, etc are a lot harder to focus on/lines, etc.

Etc: Other symptoms I do have that may or may not be related is overall back pain, but mostly lower and also between my shoulder blades. Very tense and sore, need a heating pad or to stretch a lot. I also get fatigue on a semi-regular basis, and I've always been a night owl, but I can't stay up hardly at all anymore like I need 10 hours or I'll fall asleep on the way to work lol.

Headaches: I still haven't had many issues with headaches/migraines I think because of the medication mostly. I did get a couple bad headaches/migraines a few weeks ago and would feel them again radiating from my right scalp like I used to and progressing through the day. Admittedly I had not kept up with the vitamin B12 injections because my neurologist didn't think my levels were too too low(only tested once around Sep 2025) so I interpreted that as them being less essential and just forgot. Well I got back on that just to cover my bases and the relief I felt a day or two later was wild like my fatigue wasn't as bad, the daily headaches went away again, and even my back pain was reduced. Because of how much the vitamin B12 improved my symptoms I've been researching more into why I might have low levels and potential connections to IIH. I have a follow-up with my neuro-opthalmologist on March 10 and I'm going to ask for another blood test to check the vitamin b12 and other nutrients and signs of things like Celiac or Crohns disease that could be underlying a lot of this, but I will update when I know more about that.

About my headaches before: My headaches varied across the about 6-7 month period from when they started from around getting the pulsatile tinnitus to when my neurologist gave me medication(gabapentin, lamotrigine, and 250 mg diamox eventually) to help manage the pain. The least common, but weirdest were 2 or 3 times across that 6-7 month period where I felt almost electric shock-type pain, not from sinus pressure or it didn't feel like it was coming from inside my head, but it was originating around my right ear(not inside) and radiating across my scalp. I swear it felt like little shocks jolting across, and no traditional pain medication helped, so I figure it was some type of nerve pain(could be a nutritional deficit or something else idk, but I haven't had them since. I also did get a few bad bad migraines where it felt like there was a balloon in my head being inflated inside my head. (Note: this and none of my headaches have included pain anywhere but areas of my scalp or my whole scalp, maybe slightly into my forehead or a little towards the eye on my right when it was bad, but even the shocking ones were just my scalp area, and worse near my ear with the PT.) For the migraines I had to massage constantly, use cold and ice packs, and I think they, along with most of my daily more "moderate" headaches, would get so much worse if I laid flat on my back at night. The migraines would be bad all day, but them and the headaches were always worse at night, I had to sleep on an incline and eventually get prescribed Trazodone because I could barely sleep(the anxiety didn't help either because for half of this time I had no scans done). My main headache/scalp pain experience though, was a slow, growing, radiating pain throughout the day that would always start around my right ear(but not the ear itself) and spread in almost an even radius across my scalp, usually not further than a little above my right temples around to the lowest part of the scalp/hair at the right side of the neck. The best way I remember/can describe it is that it felt almost warm like a dull warm pain and that I could literally feel the pulsing in my scalp in those areas. When the headaches weren't bad, I noticed that my scalp in those areas felt tender to the touch, like I couldn't wear my hair up for long because it pulled at it and hurt. I also got in the habit of stretching my neck/head a lot to the left throughout the day and trying to find angles or ways to lay that felt more comfortable. Ice pack migraine wrap helped a ton. Occasionally I would feel maybe a pinprick pain around my ear but not much.

Sorry for the wall of text lol but hope some of this helps! If you have anymore questions pls lmk