I’ve been seeing memoirs from those living with migraine and realized I don’t really write on this condition I’ve lived with for 35 years. I sometimes distance myself from migraine. I don’t want that to define who I am, but it’s probably the biggest part of my life. Most people who know me know I have migraine and fibromyalgia. I decided to do a few blog posts to give a quick review of what I’ve done to treat this condition as well as some of the things I’ve learned about living with chronic illness.
When people see or hear the word “migraine,” many think it’s just a severe headache or call it a “sick 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. Not everyone who has migraine has headache as a symptom. Migraine can lead to auras, visual disturbances, even blindness. Light becomes painful. Touch can become painful as well. Nausea and GI upset just intensify the pain. My coordination is usually off and my ability to concentrate compromised. Migraine drains 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 exam time. I wouldn’t learn until I was an adult though about environmental triggers, those things like lack of sleep, burning the candle at both ends, and serious caffeine use that can bring on an attack.
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.
The timing is important because it was six months after I had a diagnostic procedure for interstitial cystitis. 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 such a low pain threshold.
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. I then will move on to talk about and review one of the latest – finally! – migraine-specific injectable medications available.