I’ve been in pain to a greater or lesser degree since I was twenty-one: stabbing knee pain, immobile, sore shoulders, stiff and painful feet, aching hips, etc. So you can imagine my dismay when I started developing migraines on top of the RA. They started after I got in a car accident bad enough to total my car, and over the years developed into three-day-long endurance tests. I got one a couple of times a month and the pattern was always the same.
It was like a pick piercing my head just behind one eye, usually the right, and I would wake up with it, go to bed with it, and wake up with it again – for two days, like clockwork. The third day it was usually at about half strength, or would come and go. Sometimes during the duration, the pain would vary; a quick flicker – a lick of pain behind my eyes. The pain could feel like the light display on a tuner: green, green, yellow, yellow, yellow, red, red, red, yellow, yellow, red.
Classic migraines are the type I had, the piercing headache without the neurological symptoms. I felt fortunate, in as much as I could, that I wasn’t completely debilitated; no nausea or having to lie down in a dark room. Migraines are becoming more and more common, and are the subject of more studies: based on recent findings and theories, migraine is probably a disorder of abnormal neurotransmitter function, especially involving norepinephrine and serotonin, presenting primarily with symptoms arising from cyclically altered blood circulation of the head and brain. The thinking is that it is a genetic trait that isn’t always active; stress or trauma can activate the migraine gene.
Hundreds of patients with no family history of migraine who, after a severe life trauma, especially a car accident, have developed typical common or classic migraine. Perhaps the car accident triggered my migraine gene; it definitely affected the bones in my head, causing headaches, and I also had instabilities in my neck vertebra from the RA, which contributed. If I held my head in the wrong way, or got stressed out, or did something that created tension in my neck, that was it – pain. I felt impatient and resentful every time I felt the pain begin. It just seemed like I had no control or choice about anything.
A lot of people with chronic illnesses end up developing secondary illnesses: in the medical world it is called “comorbidity.” (Charming.) It basically indicates the presence of one or more additional disorders – related or not – occurring at the same time as the primary disease. RA sufferers can have fibromyalgia, intestinal problems might go with diabetes, MS with neuralgia. I’ve suffered from fibromyalgia the last ten years or so, which involves fatigue (in addition to what the RA already provides me), and muscle and tissue pain. So the migraines made three comorbidities!
I read people’s blogs detailing their struggles with multiple dysfunctions and my heart aches – sometimes it just seems like too much hardship goes to some and none to others. (Not that I’m wishing ill, just want to spread the “love” a little.) To have something added to my already heavy health burden felt like too much for me and I know others feel the same: having two or more health challenges can feel like there’s just no space for living. Then we might get some sort of treatment for our symptoms that takes away some of the issues, but causes others.
To say I was bitter about these headaches was an understatement. After all, my head was the best working part of me – my brain was way better than my brawn – and to have a stabbing, unrelenting, shriek of pain behind my eye for days on end seemed patently unfair when my knees, feet, and hips were stiff and painful, and my joints were fusing. I went about my life, too stubborn to stop, reasoning that if I didn’t go out and do stuff on those days I felt pain, I wouldn’t go out at all!
Stress is known to be perhaps the most potent trigger for migraine and when the migraines started, I was in a relationship with V’s father, who suffered from a mental illness: the strain in our relationship caused me daily stress and muscle tension that triggered the headaches. I believe it also caused my fibromyalgia to manifest; autoimmune illnesses are often worsened by stress.
I probably could have stopped years of pain just by asking my doctor for help, but there are still remnants of my religious training that makes me want to just endure. My dad would have been so proud of my stoicism! When I was waiting out a migraine, it was as if time slowed down, each minute ticking by endlessly, with me mentally checking in a thousand times to see if minutes had passed or the pain had lessened.
I finally smartened up and talked to my doctor who prescribed something that helped take away the pain, although it sometimes makes me feel a little loopy. I noticed that leaving my unpleasant living situation caused the headaches to subside in frequency. I also continued to participate in Gyro and SPRe, both of which helped change the head, neck, and shoulder (and arms!) – structures that were contributing to the tension.
The last thing that really helped was stopping eating wheat, which reduced some of the inflammation in my body, including my sinuses, which I hadn’t noticed were even a problem. A few months into my wheat-free diet, I realized my head and sinuses were feeling much differently and my headaches became much less frequent. Since the headaches were apparently stress/neck/sinus, changing all three of those things reduced the number of headaches I had, and their intensity.
I’m still a little bitter when I get a headache. They don’t last for three days, anymore, and if I take a migraine pill soon enough, I can often head them off at the pass. I remember how bad they were before and they represent a really hard period in my life that I’m grateful is over. I know now to avoid what makes things worse, stop doing or eating what isn’t helping, and stay away from stress. I’ve had to learn that stoicism just doesn’t have many rewards, and that those of us that have one or more chronic conditions have to be our own advocates and fight for treatment – even when it doesn’t seem fair.