I’ve recently seen memoirs written by those living with migraine. I don’t write often about this condition I’ve lived with for 35 years. I like to distance myself from migraine probably because I spend so much time adapting to living with it.
I also don’t want migraine to define me, and yet people who know me know I have migraine and fibromyalgia. They might be invisible illnesses, but not to my loved ones.
I decided to do a few blog posts a while back to give a review of what I’ve done to treat this condition. I want to add my voice to the chorus. I’m now going back to freshen up my previous posts so I can add the last two parts to this migraine miniseries.
When people see or hear the word “migraine,” many think it’s just a severe headache. Migraine is a neurological condition that impacts the lives of approximately 38 million people. Two-to-3 million people have chronic migraine — I’m one of them.
What’s interesting to me is not everyone who has migraine has “headache” as a symptom. Migraine can lead to auras, visual disturbances, even blindness or stroke-like symptoms. Light becomes painful. Touch can become painful as well. Nausea and GI upset just intensify the pain. Migraine drains the quality of life straight out of people.
I started having migraine attacks at 12 or 13, sometime around when I had my first period. I guess it was considered a menstrual migraine because I remember seeing the nurse practitioner for treatment at my family doctor’s office. I was prescribed Ponstel and then Anaprox, which are both nonsteroidal anti-inflammatory drugs (NSAIDs). I would have an attack once or twice a month. Some attacks would last for days.
Back in the 1980s no one thought about going to urgent care or the ER. Many of the women in my family had suffered migraine attacks, and would offer advice about soaking in a hot tub, using cold rags on your head, etc. They would muddle through it just as I would. My attacks would last two or three days sometimes. Often my worst attacks were after stressful events, like exams. I wouldn’t learn until I was an adult though about environmental triggers that can bring on an attack, things like smoke, heavy perfume, certain foods, lack of sleep, burning the candle at both ends, and serious caffeine overload.
In 2000, I was working full time and had insurance so I saw a neurologist for the first time and thought I was managing migraine attacks fairly well. It wasn’t until 2007 that I started having non-stop symptoms where I had a headache all day, every day, and neck pain, jaw pain, visual disturbances and nausea. My coordination was usually off and my ability to concentrate compromised.
The timing makes me question whether a diagnostic procedure for interstitial cystitis was the hand that pulled the trigger. I thought it was stress because I was also grinding my teeth at night when I was sleeping. I would have a mouth guard made but eventually wore braces. At first I didn’t realize these were migraine attacks until I saw another neurologist. I was having migraine attacks that lasted days again, only instead of once or twice a month I was having at least two separate attacks a week.
Eventually I received the diagnosis of fibromyalgia to go along with migraine, TMJ disorder, and interstitial cystitis. I was just racking up diagnoses. I’ve wondered if it was triggered in me because I had lived for so long with unrelenting pain. While many in my family had or have migraine, I know of only one relation, my mom’s male cousin, who had fibromyalgia.
In my next blog post, I will share some of the medications and treatments I’ve tried and provide links to the resources that have been most beneficial in making decisions about my care.