I was only going for a routine eye exam. I became concerned when my ophthalmologist had to step out to consult with another doctor…after just a few minutes they returned and let me know that my optic nerves were swollen. I’m not sure what that meant at that time, but it made my heart beat fast. They then proceeded to tell me that it indicated something going on in my head..something along the lines of something causing pressure…they asked if I hit my head recently, if I hear weird noises in my ears, or if I experience tinnitus. I became a nervous wreck. They told me my next step was to get imaging done…imaging of my brain. That’s one of the scariest things you could hear. I started looking up things on google, and went straight to the ER.

The doctors there were so kind. They didn’t hesitate after I explained my situation.They gave me an eye ultrasound, and Brain CT. The brain CT was normal, but the eye ultrasound confirmed my eye sheath length, which was slightly abnormal in size. They diagnosed me with IIH, and prescribed me diamox, and gave me words of encouragement. They said hopefully by the time you finish this bottle you don’t have to take them anymore, and to follow up with the opthamologist. My life was never the same after that, and certain symptoms began to make sense. My head throbbing, and pulsating, feeling like a balloon, the sound of water going down my ear, sensitivity to noise or bright lights. I thought it had been a migraine. The exhaustion, or sometimes clumsiness too. The feeling of being off balance.

I thought it was because my iron was low..Fast forward to my first follow up with the ophthalmologist, I was moved to a different department.I was seeing a neuro-ophthalmologist, who just so happen to be the Professor of Optometry; Vice President for Strategy and Institutional Advancement…he went over my chart, and let me know he agreed with my diagnosis from the ER, and the medication prescribed. I was also informed that my optic nerves had slightly improved from taking the medication for 30 days…he was very forthcoming and honest. I was told we’re going to start with the basics of losing weight, and taking my medication consistently..also coming in more often to monitor my progress, and test my field vision too. I immediately went to work. I didn’t want to have this disease so bad or didn’t want to get the non-invasive treatments. The medication started making me sleep 16 plus hours a day. I had no energy to cook or clean. I have a 8 year old, so that was really tough.I had to get a pair of shades, and night vision glasses just for outside and driving. I researched food, and activities to avoid this disease.

I looked up real people's situations on Reddit, and tik tok. I lost a total of 85/90 pounds. I had always been slim, but due to mental health, I had gained about 90 pounds in my mid twenties. My doctor slowly began to wean me off diamox…and as of January 2023, I showed signs of being in total remission, so I was completely taken off diamox. I still need shades, and experience tinnitus, but not as much as I have in the past. I've also recently seen a neurologist for headaches….she also wanted to check my brain, and did a very thorough BRAIN and optic orbit MRI’s this past May. Nothing acute was found, but findings indicated IIH. My headaches came back from a wisdom tooth that needed to be pulled. The MRI’s were just another confirmation of my diagnosis. I’m glad God has led me to Doctors that really care. It’s still an ongoing journey. I’m taking it one day at a time.

Ashley
 (IIH Champ)