My Experience with Chronic Migraines

As June marks Chronic Migraine Awareness month worldwide, I would like to write a bit on my experience on having regular headaches and sometimes debilitating migraines.

I remember first starting to have regular headaches, about 3-4 per week, around the time puberty started. I didn’t make much of it because I thought it was normal, I just learned to live with the pain and power through it.

For about 15 years I thought it was normal to get a headache every other day. It was normal to feel like my brain was afloat in water and every movement I made would make the pain worse. It was normal to smell some passerby’s perfume and get a headache so strong that I needed to vomit.

For 15 years I just assumed everyone was suffering the same as me, and not wanting to bother anyone with my constant complaints over my pain (afraid to be met with “You’re just faking it, you can’t possibly be having YET ANOTHER headache”), and that stupid myth/joke that women fake having headaches to escape unwanted sex from their boyfriends/husbands, I just shut up, popped some paracetamol, and powered through this energy-draining, joy-sucking ailment.

It wasn’t until my last year at uni, at 27 years old, when I had a migraine attack that lasted a whole week that I thought something might not be right. By the end of that week I had no energy to think or talk or walk, I just wanted to hibernate - so I went to my family doctor.

She asked me how many times per week I usually had headaches - 3 to 4 - how many times per month I would get a migraine attack, with nausea and other disabling symptoms - roughly 1 per month at that time - and it was when she asked me how long has this been happening thinking it had started some months before - “No,” I said, “the earliest I remember having was when I was about 12 or 13, I’ve been having them ever since.” My doctor looked at me with horror and asked me why I had never said anything to her before, for all the years she’d been seeing me - “I thought it was normal,” - and I felt the most abnormal ever in my life. For some reason I felt shame in that.

This was when I was diagnosed with chronic migraines, started going on beta-blockers, and was referred to a neurologist.

Between that appointment with my family doctor and my first consultation with the neurologist I had the worst migraine attack of my life, during a time I was sick with the flu, and by day 6 of not being able to sleep due to the pain, I wept and called out to my mother at 5 in the morning and begged her to take me to the hospital to be put in a coma. I wasn’t taken to the hospital, I powered through it. I went a week without going to class.

When I first signed my work contract I was really scared of ever mentioning having chronic migraines. I was terribly afraid this would cause me to be fired during the trial period, as I am much less productive when I have a strong headache impairing me, and I didn’t want to take sick leave and having my colleagues thinking I was faking.

I finally got my neurologist appointment after my work trial period ended. I went to it and he took two looks at me, asked me if I had ever had depression (I had had a few years before), and just waved me off with a prescription for what I later discovered were anti-depressants, something that I had sworn never to take again as I hated my time on them. Still, I took them - I wanted to be normal.

After a couple of weeks of feeling like shit - as anti-depressants are wont to do - I had a bit of relief in terms of regularity and intensity of my headaches, but that was short lived and the medicine stopped working.

Every 3 months I would go to the neurologist, and he would give me some other drug to try - anti-psychotics, anti-seizures, more anti-depressants - and every time they would help for a couple of months - there was even one time that I managed to go through an entire week with no pain and was like I was feeling in my most clear state of mind and thought “Is this what it’s like to live as other people??” - but then bam! back to square 0. No tests, no scans, no nothing - as I would eventually discover that headaches and migraines are just an unknown to the medical community and they are just throwing pasta to the wall and see what sticks.

Unfortunately for me, 3 years of trying different meds have done little to improve my condition. I have once again built resistance to the chemicals and am saddled once again with 2-3 light headaches per week, another 2-3 disabling headaches per month, and about 3 severe migraine attacks with nausea every year.

I remember distinctly a conversation with my friend about headaches - it was funny because she said she had about 1 to 2, and I asked her “Per week?”, and she looked shocked at me and replied, “No! Per year!”. We laughed, but I never felt as much of a freak as then.

I am now trying to find another neurologist as I have moved to Finland and see if their approach differs from my previous neurologists.

But on a better note, eventually I told my employers that I suffered from chronic migraines, and my team has been nothing but supportive when I have a bad day and need to rest, and I’ve found that I’m not alone in my struggle, I am not abnormal, and I am not worth less or less important because I live with chronic pain.

My hope is that chronic pain is treated with empathy and understanding, especially in the workplace, and that the technological advances in medicine discover more on the mystery that is the brain, and hopefully a cure for migraines.

A big hug to all of you living through chronic migraines, you are not alone.