Headache…it all started with a headache.

In early December 2022, I went to my eye doctor for my routine scheduled appointment expecting to have a slightly different prescription, choose new frames for the year and pay an overpriced bill for enhancements for my lenses and new contacts. Instead, my doctor noticed fuzziness on my images behind my eyes and asked if I was experiencing headaches. I responded yes and attributed the pain to my current job, being a mom and wife. The doctor proceeded to perform tests and noticed the vision in my right eye was irregular and immediately referred me to a Retina Specialist. We made the appointment together and I quickly traveled to the office while calling my husband and brother to make arrangements for my daughter.

After imaging and tests with the Retina Specialist, he was unsure if I had a brain tumor or a condition called Idiopathic Intracranial Hypertension. I was terrified because the two were considerably different and the only way to get an answer was to go to the emergency room right away. My husband and I traveled to the ER and left without answers due to it being overcrowded and I had to return home. During this entire time, my headache had gotten worse and over the counter medication didn’t seem to help. We tried again the next day and I was diagnosed with Idiopathic Intracranial Hypertension. The Retina Specialist had given me a note to pass along to the ER doctor and after she read it, she quickly ordered a CT scan of my brain. She also performed a failed bedside spinal tap and I then was taken to radiology to have another which helped alleviate the pressure off of my brain and behind my eyes. I think it was the direction of the eye doctor then Retina Specialist that accelerated the process and in the end, the diagnosis.

Recovery from the spinal taps was rough and I later learned that I possibly had a leak in spinal fluid which caused a delay in recovery. I was unable to stand up for more than 15 minutes for about a week. I had to lay down most of the day. I could only sit up to eat and do minimal tasks. The areas of the incision was sore and the procedure only helped my headache for a few days. The medication prescribed also had side effects that impacted my daily life like diarrhea, drowsiness, ringing ears, loss of appetite and scattered thoughts. After a while, my body got accustomed to the medication and I was able to manage but I had to create a routine.

Fast forward to January 2023, the medicine is helping with the headaches but my body is taking time to adjust. My diet has changed as I am not able to eat a lot in one sitting and I have to break my meals up from three times a day to around six times a day with smaller portions. I am also in my last semester in a masters program and student teaching with second graders. Around February or March, the medicine is no longer helping with my headaches which have turned into full blown 24/7 migraines. My neurologist prescribes a medication that helps but can only be used around six times a month so I use it to complete homework, if a migraine is really bad during my student teaching or to get through a class. Eventually, I meet with my neurologist and express my angst and she doubles a medication but it has the same side effects as when I first began the medicine and I feel like I am back at square one. After a few appointments and advocation, the neurologist advises that I get a brain stent. First, I undergo an exam called an Intracranial Angiogram. You are semi conscious during this procedure and the surgeon goes through your wrist or groin to test the blood flow pressure in your brain to see if the stent will be a good choice. Full recovery from this procedure was about two weeks as they made incisions in my right wrist and both sides of my groin since my wrist was too small to check the pressure. Eventually, I underwent the stent surgery and after recovery, it was the best decision I ever made. My migraine slowly fizzled out, the ringing continued, and I am hoping the vision in my right eye returns to what it once was.

I am not sure what really caused this to happen to me. I never considered myself to be an excessively overweight person even though I did begin to gain weight before this condition struck my body. It has taught me to slow down, ask for help when I need it and things don’t always go as planned.

Nikole
 (IIH Champ)