A Disease So Bad, Hell Sounds Like a Good Time

People like Harvey Weinstein deserve to live with migraine, not fun ladies who just want to kiss their dogs’ heads, watch 30 Rock and listen to their little songs. And yet, here we are.

I developed migraine attacks around the time I gained voting rights. 

I noticed something was wrong when an attack happened during a Buffy the Vampire Slayer broadcast. Pain started creeping into my head shortly after dinner and by the time Buffy aired at 8 p.m., I was experiencing a brand new agony.

Buffy was and always will be my favorite television show. So, when I got up halfway between an episode to go to bed, my family (watching right along with me) was shocked. 

Yes, I strategized grabbing a front-row seat to see Sarah Michelle Gellar talk about her food company. No, I didn’t care about the company. Yes, we made eye contact.

Honestly, I was just as shocked. This was 2003 and streaming was still years away. If you wanted to watch something, you had to watch it at the exact time it aired or record it on your VCR. I guess TiVo was around then, too. But definitely not Netflix.

I digress.

During those early migraine attacks, I sat in disbelief that my brain could turn on me.

“How can a headache hurt so much?”

“Why am I throwing up?”

I’d learn, nearly 15 years later, that the pain is not a headache, it’s a completely different thing: a neurological disorder that affects 39 million Americans, primarily adult women, a disability recognized by the ADA. 

Migraine.

It’s migraine, not migraines 

My dog, who takes advantage of the mid-attack bonus cuddles.

I was 35 years old when I learned migraine is a disease and not a bad headache. For example, symptoms associated with migraine are called ‘migraine attacks,’ not ‘migraines.’ I have migraine, which causes migraine attacks. 

Learning the proper terminology more than 15 years after my first attack sent me a big message: few people actually understand how to talk about the disease. When I learned the potential damage I did by incorrectly talking about migraine, I sought to undo that damage through advocacy. 

Around 2018, when my attacks became chronic, I opened up more. I thought if I shared a behind-the-scenes look through social media and my writing, then I could educate a lot of people at once. I could make life easier for myself and others living with migraine by sharing my truth. 

And my truth is this: 

Living with migraine is a miserable existence, only exacerbated by ignorance. If I fight ignorance by sharing information, I could inadvertently fight it on behalf of someone else.  

So, for those not in the know, let me show you how migraine is so much more than just a bad headache.

Not all migraine patients are created equal

Courtesy of American Migraine Foundation

I’ve learned migraine symptoms cause the most confusion for people who do not live with the disease. That’s because they vary in type and severity. One person’s average attack may be mild compared to another’s and—fun fact!—some migraine patients don’t experience head pain. 

For people who aren’t living with the symptoms, it is hard to grasp.

Understanding migraine’s four phases is the best way to gain clarity on what someone with the disease experiences on a regular basis. The four stages include prodrome, aura, the attack itself and post-drome. Each stage has very different symptoms with varying severity and not everyone experiences symptoms the same way. 

Prodrome 

The prodrome stage starts up to two days before a migraine, and while many migraine patients can identify this stage, I am not one of them. Symptoms range from food cravings and increased thirst to constipation, mood changes or frequent yawning. 

Aura

Some migraine patients experience this stage more intensely than others. Aura is a symptom that affects vision. It can cause blind spots, light flashes and ‘sparkles.’

People who experience aura more intensely lose the ability to speak clearly, experience severe vertigo and/or nausea.

I have never experienced aura symptoms, so it is difficult to speak on this symptom. My knowledge is simply based on what I’ve read or heard from other people.

Attack

Here we go!!! This is my time to shine! 

Of the four phases, I experience attack and post-drome most intensely. And let me tell you, the attack is the most horrible, life-altering (in a bad way) experience in a life full of experiences. And it happens at least 20 times a year.

What’s difficult for people to understand is that I am of no use to the world. During an attack, I am either in bed with the shades drawn or shoving my face in a toilet. No light, no music, no talking, no screens, no smells, no food. I just have to sit and wait for it to pass. 

My average attack lasts two days but I sometimes wait up to three days for the attack to subside. A few attacks were so impenetrable that only emergency room trips cut through the pain and nausea. In very rare circumstances, an attack passes within a day.

Post-drome

The pain is over but things aren’t clear just yet. 

The post-drome stage is what we colloquially call a ‘migraine hangover’ because of how lethargic it feels to come out of the attack stage. 

Many people with migraine, including myself, use sleep as a weapon. We sleep, however, we do not rest. Often, nightmares accompany my attacks and pain wakes me up in two-to-four-hour intervals. By the time an attack lets up, I am exhausted.

My cognitive abilities always fall victim to the violence that ravages my brain during an attack. I may be well enough to attend meetings and answer emails but executing my work is always a monumental task. Word loss—known medically as ‘aphasia’—is definitely not a writer-friendly migraine symptom. 

Finding heaven when you live in hell 

Cool news! I didn’t have a migraine attack here.

People like Harvey Weinstein deserve to live with migraine, not fun ladies who just want to kiss their dogs’ heads, watch 30 Rock and listen to their little songs. And yet, here we are. 

I’ve spent years trying to find a cure for myself, however, I’ve found more peace in acceptance. I used to get so hopeful whenever someone shared a migraine miracle story. Now, I’ve tried enough of those ‘miracles’ to know I am miracle-resistant. 

I will likely die without getting control of my disease and surrendering to that fact offers strange relief. Instead of focusing on the next appointment or trendy tip, I focus on creating meaningful moments between my attacks.

Does that mean missing a Charli XCX or Of Montreal concert? SADLY, YES. 

But I used to forgo ticket purchases or even plans with friends for fear my disease would dictate otherwise.

Now, I don’t.

When I let my disease dictate my life, I lose.

And while I’m not the most competitive person, I’m not going to let my brain make me a loser.

I live with chronic migraine, which affects how much work I can take on. On average, I lose one workweek a month to migraine attacks. Not a Fit for Our Publication is my way to raise funds to manage my disease while offering something in return. You can help me out by subscribing to Not a Fit for Our Publication, sharing the website, sharing a free blog post and gifting a subscription.