The Migraine Monster That Follows Me Everywhere I Go

When you were younger, you may have had an imaginary friend or a teddy bear you took everywhere you went. I don’t have either of those things, but I do have something I carry everywhere I go. I have a migraine monster.

Like an imaginary friend, he is invisible. In fact, when he is sleeping, I don’t even realize he is with me. That is when we are most content. My monster sleeping and me going about my day without any regard for him. That may sound harsh, but it isn’t. That is also how he likes it. My migraine monster wants nothing more than to sleep, and sleep, and sleep.

It would be great if I could just leave him at home and let him sleep, like you could with your imaginary friend or teddy bear, but we are shackled together by my genes. He is always with me and when he isn’t sleeping, he isn’t happy.

Have you ever been woken abruptly from a delightful dream? I bet you weren’t very pleased. Well, my migraine monster detests being woken up, too. He gets grumpy, irritable and angry. When he gets angry, he lets me know it.

He sticks spikes through my eyes.

He magnifies the smells around me so my friend’s perfume smells like the entire fragrance section of a department store and my brother’s fabric softener is so pungent, I feel like I’m drowning in the bottle.

He bangs the side of my head with a cast iron frying pan in time to the beat of my heart.

He intensifies all light so it feels like I’m staring straight into the sun.

He straps me to the Cups and Saucer carnival ride and puts the speed on the highest setting.

He makes my taste buds painfully explode when I take a bite of food.

He amplifies every noise. The ticking of the clock sounds like a loud gong being struck every second.

He traps my head in a vice and cranks it tighter, and tighter, and tighter until I think my brains are going to burst.

The angrier he gets, the more extreme and painful his attacks become. When he gets really, really, angry, he does everything at once! It is unbearable. I used to want to run away from him or destroy him, but I couldn’t. We are shackled together by my genes.

I’m not the only one with a migraine monster. One out of every seven people has one. Some people have migraine monsters who make them see flashing lights or feel numb on one side of their body. Other people have migraine monsters who make them vomit. Migraine monsters can also make it difficult for people to think or speak clearly. Many people have migraine monsters who only wake up a few times a year. Other people have more restless migraine monsters who wake up more than 15 days a month. And then there are people whose monsters don’t sleep at all.

There are treatments, including medications, that can help migraine monsters have better behavior. Some treatments calm them down when they get angry and help them fall back to sleep. Other treatments help them sleep more deeply so they wake up less often. Some monsters respond very well to these treatments and they sleep almost all of the time. Unfortunately, they have limited effect on many migraine monsters, including mine. Fortunately, I have discovered other ways to help my monster settle down.

I can drag him to my room. He likes it better there and if I turn off all the lamps and close the curtains, he has no bright light to shine in my eyes. If I eliminate all odors, he has no smell with which to overwhelm me. If I can get away from noises, he has nothing but my heartbeat to amplify. If I lie in a hot bath, or in my bed with a hot compress, he becomes a little less active. I feel well enough to remember to breathe.

I hold his hand and we breathe together. Nice, big, deep breaths that fill our diaphragms and lungs. Calm in and anger out. Calm in and anger out.

Next, we pretend we are in a happy place. We imagine feeling safe, comfortable and pain-free. It’s not too hot and it’s not too cold. Our minds are content and our hearts are full. I can feel his racing heartbeat get slower, and slower, and slower as he becomes more peaceful.

 

As you can imagine, I have tried hard to figure out why a monster, who likes to sleep so much, wakes up. Sometimes he wakes and I have no idea why, but often something happens to trigger it.

He wakes up when I eat or drink things he doesn’t like.

He wakes up when I vary my sleep schedule.

He wakes up when my hormone levels change.

He wakes up when I get dehydrated.

He wakes up when I am around smells, like campfires and scented shampoos.

He wakes up when the weather changes.

He wakes up when I’m around flickering florescent lights.

He wakes up when I eat breakfast, lunch or dinner later than usual.

He wakes up when I sit in front of a screen for a long time.

The good news is that I can help my migraine monster sleep by avoiding triggers. If he is already awake, avoiding triggers can keep him from getting more agitated. I also discovered some things that help him sleep longer and more deeply, making it harder for the triggers I can’t control to wake him. If he is already awake, these things may calm him, or at least keep him from getting more turbulent.

He is calmer and sleeps better when I keep a regular routine.

He is calmer and sleeps better when I take supplements and eat foods he likes.

He is calmer and sleeps better when I take him for a walk every day.

He is calmer and sleeps better when I am mindful and I remove stress.

He is calmer and sleeps better when I do relaxing activities.

I wish he could sleep all the time, and I’m sure he does, too. I know he doesn’t mean to torment me, so I try to help him, instead of blaming him. We are suffering together because we are shackled together by my genes. I do my best to breathe, relax and think of a happy place. A place where I am safe, comfortable and pain-free. Where it’s not too hot and it’s not too cold. Where my mind is content and my heart is full. A place where I am with my migraine monster and he is fast asleep.

What monsters do you have?

Globally, one billion people have migraine and it is the sixth most disabling illness in the world. It is not just a bad headache; it is an extremely incapacitating collection of neurological symptoms. The triggers, and the treatments that help limit migraine, are different for different people. It is important for those with migraine to figure out how they can best ease their symptoms. A headache specialist can help with this process. Unfortunately, in the United States, there is only one headache specialist for every 85,000 patients.

Research is helping us to understand and treat this disease. Lyn Griffiths, PhD, and her team at Queensland University of Technology, are conducting a study to detect the genes that play a role in familial hemiplegic migraine and to develop diagnostics and interventions that are specific for sufferers of this kind of migraine. Imagine knowing the cause and treatment for each person’s migraine. Scientists are working hard, but they lack funding to solve more migraine mysteries. In 2015, the National Institutes of Health (NIH) funding for migraine research was just $0.50 per migraineur. It is hard to believe that so little money is allocated for migraine research when healthcare and lost productivity costs associated with migraine are estimated to be as high as $36 billion annually in the United States. How much more healthy and productive would people with migraine be if there was a better understanding of their disease and they were able to let their migraine monsters sleep?

How to help migraine monsters sleep:

– Be supportive of those you love who have migraine by helping limit their exposure to triggers.

– Urge your government representatives to allocate more funding for migraine research. (In the United States visit The Alliance for Headache Disorders Advocacy for more information.)

– Give generously to The Migraine Research Foundation so scientists can better understand and treat this disease.

– Participate in Miles for Migraine events.

Other migraine resources include the Migraine World Summit, National Headache Foundation, American Migraine Foundation, American Chronic Pain Association, American Headache and Migraine Association, Migraine Research Foundation and the Migraine Trust.

I wrote this piece because a pharmaceutical company created a “virtual migraine experience” that fell way short of how my migraine feels. I wanted to do a better job of illustrating the experience. I included some symptoms, though there are many others. I thought a childlike picture book format would be a more inviting way to explore migraine than a paper explaining the symptoms.

I also want to show I am not my migraine. I want to be around music and light and eat chocolate and ice cream. It isn’t my choice not to do those things; it is because I suffer from migraine. By personifying my migraine condition, I hoped to show there is a force, separate from me, that is controlling my body. It makes me avoid triggers and seek helpful treatments. I wanted it to have a body and a face for me, and my family and friends, to direct our disappointment and frustration. I wanted that “being” to be migraine, not me.

While wanting to show migraine as separate from me, it is undeniably a part of me because it is in my genetic makeup. I compared it to a teddy bear because I wanted to take away its power to scare and dominate me. A huge, upset grizzly bear is frightening, but a teddy bear is not. When migraine feels like a ferocious migraine monster, it makes me scared and angry about how my life has changed. When I picture migraine as a cute, friendly monster, it is easier to accept it. In doing so, I have more acceptance and kindness for myself. I hope that, with more research and treatments, my migraine will cease to be painful or a “monster.” It will just be this inert condition I carry around with me.

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