Life disrupted/ Searching for Answers

Hi all new here just trying to get to the bottom of it all. Sorry for the long post. I’m exhausted just trying to figure out what’s going on with me.

November of last year had an episode vision blurriness, peripheral vision loss in both eyes and pounding headache lasted for about 45min. Did a week long hospital stay. They thought I had a stroke at first. They ruled it out after I presented no other symptoms. Had CT, MRI and LP.

CT was clean and LP opening pressure was 17 so they ruled out IIH. Based on what I was being told that sounded like the most feasible diagnosis. Honestly it still does. All docs I’ve seen point towards it but because my OP was fine according to them it’s ruled out.

MRI - Mild focal herniation of brain parenchyma of the posteroinferior right temporal lobe into an arachnoid granulation along the junction of the right transverse and sigmoid sinuses (series 1000, image 148). Corresponding focal narrowing of the sinus at this level.

Was sent home with ophthalmologist and Neuro follow up. Symptoms got worse headaches became more frequent, stayed having dizzy spells, seeing stars and black spots, peripheral vision went back out temporarily but came back in. Stress, strenuous activity will cause dizziness feel like I’m about to pass out. Have to take more breaks when doing anything. I can’t even stand longer than an hour cooking or going shopping without getting dizzy. Eyes are sensitive to light. I spend most time in bed to not trigger a headache or dizzy spell.

Had Opthomolgost visit January - Eyes are healthy but optic nerves in both eyes are slightly swollen. He advised see neuro.

Finally had neuro visit yesterday 3/4 they did not do another MRI or anything. Just diagnosed with Chronic Tension type headaches and prescribed topamax to take for next 3 months to see if it helps. I feel like I have been the one that’s more concerned about my health these past few months. It’s been a daunting task to see anyone.

I just want to be able to do normal daily activities again. These past months have been brutal.

Anyone have similar experiences.