By Selena Marie Wilson
Five years ago, I was reasonably healthy. I was working full time, taking 15 semester hours a week in college, in the honor society and on the dean’s list with a perfect GPA. I had two teenagers still living at home whose lives I was very much a part of.
So much can change so fast.
Five years ago, my episodic migraines that had only plagued me a few times a year for most of my life suddenly increased in frequency and intensity. I developed new symptoms beyond the basic head - pounding pain, nausea, and visual aura. Suddenly, I was having a few migraine attacks per month that flattened me for at least three days, sometimes a week.
I put it down to stress. I cut my work hours a bit. I finally saw a doctor for abortives and rescue meds.
It didn’t help. My migraines continued to escalate. Within six months, I was having near constant attacks with maybe a few pain free days between them. I had never heard of chronic migraine. Neither had my doctor, who continued to treat them as if they were episodic, but threw in a few tries of preventive medications that did nothing.
Then came the kicker a year later; a two month stretch of constant high level pain that saw me in the ER three times and my doctor’s office weekly. It brought along a furious ER doctor who taught me that my sudden change in frequency and symptoms should have warranted tests and scans, the loss of my job when I didn’t qualify for FMLA leave, a lot of people who didn’t understand and seemed to think I was causing this to happen, and tons of unsolicited advice.
It also brought the world of daily chronic migraine to my life.
I lost my insurance along with my job, and spent a year completely untreated aside from a few ER visits. I moved in with my boyfriend, and I managed to hang on in school another year and to do as much as I could with my family, most of who did not understand how nothing could help.
I thought it couldn’t get any worse. I was already in daily misery, after all. I was just beginning to discover the migraine support community online and learn about chronic migraine. I learned a lot about migraine disorder in that year: that it’s genetic and neurological, that there’s no cure, and that it isn’t as easy to treat as many think, even for many episodic sufferers.
I learned that once you are chronic, many treatments aimed at reducing frequency and severity of attacks often only offer miniscule relief…or none at all.
I learned that untreated or inadequately treated episodic migraine raises your chance of becoming chronic, but sometimes it happens for no apparent reason.
I learned that chronic migraine and high episodic migraine are life stealers. That giving up things you love and trying to push through the pain to have any quality of life are par for the course.
I learned that depression and chronic pain go hand in hand, and if you’ve had issues with depression before, you’re at much higher risk of suicidal thoughts and ideation. I’ve struggled with undiagnosed depression most of my life, with self-harm, and I attempted suicide at 19…so the dark rabbit hole of depression was closer than I knew. I’ve been suicidal twice in the past five years, but not attempted. I have had medications that amplified that depression and suicidal ideation, and thankfully a doctor that noticed the extent of my depression and prescribed (miracle of miracles) the antidepressant that turned out to be right for me.
It isn’t a miracle fix, but it has helped immensely.
I’ve learned to see the rabbit hole creeping up.
I’ve learned when I’m dancing on the edge of that rabbit hole, asking and reaching out for help (hard as that is) is absolutely essential for me.
I’ve always used my gifts for writing and art to help me through rough times and to express myself, and I started writing migraine poetry when I first became chronic. Submitting my writing to a support page and the reaction to my writes was my first realization just how many sufferers like me were out there, and how many needed a voice for what they were going through…and someone to say, “I understand, and I believe you.”
I began to advocate before I even knew what an advocate was. I started creating awareness graphics, writing articles and poetry, and speaking out. I became an admin in a migraine support group…and it has both kept me sane and given me a feeling of accomplishment that I lost when I had to quit school and work. It’s helped me find the courage to reach out to countless others and to tell my story.
As of last year, my symptoms have begun changing again…new ones crop up every so often. I’ve learned that acceptance isn’t giving up, and that hope and positivity isn’t often what someone who isn’t chronically ill pictures it as.
My family has finally arrived at a place of acceptance as well, and some even advocate for awareness. I’m lucky-a lot of migraineurs don’t have the kind of support network I do. Many not only don’t have support, they have families that judge them for their illness and make no effort to understand their disorder.
I see a wonderful specialist as of a year ago, also. I began botox treatments with her, and have seen some improvement-pretty slight improvement, but enough that I can sometimes play with my grandson, go shopping with my daughter, or spend an evening watching dvds with my son. Occasionally I can manage a few hours out to dinner with my guy.
That slight difference doesn’t change the fact that I’m disabled, and it doesn’t change that I’m in daily pain. It does give me some lower pain days and helps my other meds work better.
And on the days it helps, it’s worth it. On days it doesn’t, well, I wonder if it’s worth it. But I also know part of that is depression talking.
So much can change so fast.
I’m still learning that as I go.
Editor’s Note: June is Migraine Awareness Month and The National Pain Report has been sharing a number of news stories and first person accounts on migraines. We appreciate your comments and thoughts. Let us know by emailing us Editor@NationalPainReport.com .