Journey of Migraine Patient Cyndi Jordan
Eighteen Months Ago….
The pain exploded on the left side of my head, throbbing and piercing, as I once again knelt before the porcelain throne. I was so tired of the days of forced captivity in a dark and quiet house. Any movement, any noise, any light seemed too much to take. I worried that things would never get better. For weeks and months and years on end, I had suffered with intractable migraines – migraines 24/7 – ones that never seemed to let up. Not only was the Beast, as I called my migraines, destroying my physical well-being, but it was also wreaking havoc on my emotional, professional, financial, and social well-being. After over six years of this, however, I had become resigned to the fact that this was my new reality. While I strove to accept and embrace my life with intractable migraines and to find blessings in each day, it was a constant battle, and I was tired.
This weekend I went Christmas shopping, played with two five year olds for eight hours, watched a movie (without earplugs or sunglasses), and attended church. I’m volunteering and looking forward to starting a new full-time job. Life is ridiculously happy and full of everyday things. On Wednesday, a cold front moved through town, and I found myself pacing the house, moaning with pain, praying for it to end, and then I started laughing as the realization hit me that I hadn’t had to deal with a migraine of that magnitude for several weeks! A short year earlier that kind of pain was commonplace.
For years, I had searched for relief from my constant migraines. I tried medicine after medicine, but none of them seemed to help. While I had always been averse to pain medications, a well-meaning headache specialist suggested that I try an opiate pain injection to give myself “at least some quality of life.” I remember the relief of having that pounding pain and constant nausea recede. He sent me on my way with a prescription for the medication. It did take the edge off the pain and also helped me to sleep through the pain. I believed it was better than the constant pain.
However, my migraines seemed to just get worse. It was a vicious cycle where I watched the clock until I could take my next dose of medication. Because I had educated myself about migraines, I was familiar with the concept of Medication Overuse Headache. However, my mind kept hearing Medication Abuse Headache instead. I certainly wasn’t abusing my pain medication. I was, after all, taking less than half of what my headache specialist had prescribed. As things became worse, my world became even smaller, and I began to travel to other headache specialists. At one point, a specialist had me go off the pain medication, and, even though, I stayed off the medication for two difficult months, I saw no change in the frequency or intensity of my migraines. I moved on to another headache specialist who urged me to get back on the pain medication, so I did with relief – anything to stop the pain.
However, as I would sit in the dark at home, I would run the idea of Medication Overuse Headache over and over in my head. Everything I read and heard on migraine education made me wonder if that wasn’t at least a part of what was going on. Even though my doctor assured me that MOH was not my problem, the idea kept niggling at the back of my mind. While my pain medicine gave me some short-lived relief, things seemed to be getting worse in the long run. This certainly wasn’t the quality of life I wanted, even if it allowed me to escape the pain at times.
Finally, in the Fall of 2015, I had enough. It was time for a drastic new approach. I stopped taking the pain medication and held on for dear life as I rode the roller coaster of pain that ensued. I kept telling myself that anything had to be better than the way I had been living. Then I stopped taking the benzodiazepine that my doctor had told me to take when I “just needed to sleep through the pain.” I eliminated sugar and flour from my diet. I stopped drinking those “therapeutic” coca colas. I made myself go to bed and get up at the same time every day, seven days a week. I forced myself to get out and exercise. I stopped wearing my sunglasses inside. In short, I made one huge change (discontinuing my pain medication) and a million little ones.
Then one day, I realized that my head wasn’t throbbing. I sat still, listening for the pain. Nothing. When I got a migraine later that day, I acknowledged the inevitable – what had happened earlier had been a fluke. But it happened again, and again, and again. Over time, I began to realize that I was having far fewer and far less intense migraines on a regular basis. I started dipping my toe back into life, waiting for the Beast to attack me for having the presumptuousness to believe I was better! Yet, every day I did more and tried more! My purse was no longer bulging with different strengths of sunglasses, ear plugs and Vicks Vapor Rub to mask smells. I was no longer the person who couldn’t be relied upon! Migraine preventative and abortive medications, which had never helped before, began to work. My life had been turned right side up.
As I look back over what has happened, I believe that the doctors who suggested that I was experiencing Medication Overuse Headache were very right, and the ones who assured me that I wasn’t were very wrong. That question I asked every six months about whether or not I was in MOH was my voice of reason. I am an intelligent woman. I know what the research says about MOH. I had heard it from doctors and migraine advocates; however, I had also heard the reverse from doctors and other “advocates.” Yet, when I really stopped and listened to myself and to my body, I knew something had to change. I combined that with all the education I had garnered over the years about migraines and decided that the pain medication which was giving me “some quality of life” might just be the thing that was robbing any potential I had for a quality life. Getting off the pain medications, along with the other changes I made in my life, were not easy. In fact, it was downright brutal at times. And yet here I am today, writing an article about a life I couldn’t even begin to imagine a year ago.
I can tell you now that it was worth every minute of the difficult times without my pain medication. Yes, I still get several migraines a week, but they are nothing compared to where I was a year ago! And they go away! I am free of 24/7 pain! I am free of sleeping my days away in order to avoid the pain. Now, this is true quality of life!
Author: Cyndi Jordan