Migraine: A Full Time Job
Last updated: April 2022
Living with migraine disease has many challenges. I live with chronic intractable migraine disease and have been unable to sustain any gainful employment. The outside world perceives my inability to work as a vacation. The outside world doesn't see the hours spent at doctor visits, phone calls to insurance, and pharmacy issues while experiencing an attack. Migraine disease knows this is furthest from the truth.
My life now revolves around frequent visits to various specialists. I frequently hear: "Why are you always at appointments? "Uh, you have to do those injections again?
I have overlapping conditions that coexist with my migraine, which requires a multidisciplinary approach. I frequently ask myself, when will this end? I live on a fixed income, and many of our community members know how expensive these visits can be. Copays, treatment costs, parking, and the emotional take a toll.
Migraine medication management
My cousin was visiting from out of state, and I was in the midst of an attack. She saw me staggering to the closet where I had two bins of medications, and she was in complete shock. Her response to me "you are probably having so many problems because of all the pills you take."
Accompanying symptoms such as nausea, dizziness, tinnitus, and digestive issues require specific medications. I live in fear of running out of medicine, so I tend to hoard them. I spend my Sundays filling up my four large pill containers for the month. I have to check and recheck to ensure I have not mixed up the schedule, thanks to my scattered brain.
Constant symptom and head pain tracking
Brain fog is a common issue among migraine patients. Every visit to my headache specialist, I must complete a Global Assessment of Migraine Severity (GAMMS). Thanks to my cognitive decline, I have to write down every detail of my life.
I use an app to record symptoms, mediations/alternative therapies used during an attack and start/end time to provide an accurate account of my attacks.
My medication regimen became more complex when my migraine transitioned from episodic to chronic. My primary physician and I agreed on a new course of treatment; however, I was informed to try a few cheaper options first.
What do you do when your physician prescribes medication, and you receive a denial letter stating this medication is not covered and the cost will be $1200?
The insurance providers stand by a cost-benefit algorithm, but the patients suffer. I had to go through three ineffective medications before gaining access to an appropriate drug. I was provided samples of Emgality recently. It took two prior authorizations and my calling to stress the urgency to get approval. In the end, I gained access to this medication, but I know so many others are not as fortunate.
Invisible no more
I need to showcase how living with a headache is truly disabling. The amount of effort required daily to be somewhat functional takes unimaginable effort. I am focusing on my mental health and taking it day by day.
Are the family and friends you will be seeing this holiday season understanding about migraine?