What’s under my hat?

Today is International Cluster Headache Awareness Day.

The European Headache Alliance has launched an Under the Hat campaign to create awareness of cluster headache, migraine, and other headache disorders. As part of this campaign, they have encouraged patients to post photos of themselves wearing a hat along with a brief description of what it’s like to live with a headache disorder. Rather than offer a clinical explanation, I’d like to take this time to tell you a little about life with cluster headaches.

If you’re not familiar with cluster headache, please visit the links below to learn more.

The day my life changed forever

Sunday, October 16, 1999 is a day my family and I will never forget. That is the day that our lives changed forever. I’d been stuck in bed all weekend with a raging migraine that would not quit. This wasn’t an uncommon occurrence, so no one thought much about it. Sunday morning the house was quiet and dark. My husband and 3 year old son had left for a few hours while our 7 year old daughter stayed to play while I rested. I had been drifting in and out of sleep for a few hours, patiently waiting for the migraine to finally disappear when all hell broke loose.

The searing pain tore through my right eye as if I’d been struck by lightning. Instinctively I shoved my fist into my eye socket, rolled into a fetal position, and desperately tried to muffle that primal scream pouring from my lips.

Frightened, my daughter ran in, “Mommy, are you okay?”

Not wanting to alarm her, I lied, “I’m okay. The migraine is just getting bad again. I’ll be all right in a bit.”

But I wasn’t all right. A thousand burning, white-hot knives slashed through my eye, forehead, and temple. Desperately I tried to find a comfortable position in which to relax until the pain subsided. After all, that’s what I had learned to do for migraine — relax, stay calm, and the pain will ease up. Only this time, nothing I did made any difference. I let go of my migraine training and followed my instincts. I paced and rocked, pulled my hair, beat my head against the wall, and swore a thousand curses under my breath. Ever mindful of the little girl playing across the hall, I stifled the urge to wail and scream. Slowly I made my way to the bathroom where I discovered the cool edge of our cast iron claw foot tub. It provided a bit of relief as the stabs began to ebb and flow.

Just when I thought the nightmare had ended, it struck again with a vengeance. I remember rolling around on the bathroom floor, moaning in pain, thinking that this might be the end. My head felt as if it had been split open by an axe while tiny demons poured battery acid in the open wound.

“I cannot die in front of my daughter,” I reasoned. It was this thought that prompted me to call for her.

“Yes, mommy,” she whispered.

I uttered those dreaded words, “Mommy needs you to call 911. I need help. Do you remember what to do?”

“I think so,” she walked away to grab the phone. I heard her speaking to the operator, “My mommy needs help. Her head hurts really bad,” she explained and then carefully gave our address. I could hear her still talking to the operator as the paramedics arrived.

I was so delirious from the pain that I could not safely walk down the stairs. My husband arrived home to see an ambulance in the driveway and me being carried out of the house on a stretcher. The next afternoon I woke up, groggy and disoriented without any memory of the ER.

This same routine went on for another eight months. At least once a week (and usually more often), I would end up in the ER with pain so intense that I could not lie still or stay calm. The doctors began to think I was a lying drug addict because they expected me to behave as though I had a migraine (lie still, be quiet, lights off, ice pack on my head). I did get migraines in the aftermath of each attack. But these attacks were unlike any migraine I had ever experienced.

My doctor was at a loss, too. That’s when he suggested I see a neurologist. Within a few minutes, the neurologist had diagnosed me with chronic cluster headaches. He set me up with oxygen tanks and a Verapamil taper to slow them down. Those metal tanks were my lifeline. I stored a few under my desk at work and several more in the car. The rest were split between a corner in the living room and upstairs in the master bedroom.

Fast-forward 16 years

Not much had changed. Verapamil still kept the attacks down to a dull roar and oxygen stopped the bad ones in 20 minutes or less. My neurologist had just referred me for Botox injections to treat chronic migraine. We didn’t expect the treatment to impact the cluster attacks, but thought it was still worth a try to put a dent in the migraine attacks.

Within a few weeks after that first round of injections, I realized that I hadn’t needed to use my oxygen for a while so I checked my headache diary. It had been almost two weeks since my last cluster attack. I tried not to get too excited as there had been long breaks before. Still, I was hopeful.

Remission!

My next cluster attack occurred 6 months after that first injection. The cycle was mild and brief — just one week. I am now officially diagnosed with episodic cluster headache. I have cycles for about one week every 3-4 months. Botox has been a miracle. Don’t misunderstand — the attacks I still get are horrific and without oxygen I’d be a complete psychotic mess. Yet thanks to Botox, I only have to face this demon a few times a year instead of several times a week.

Want to know more?

Finally approved for Botox
Hopefully skeptical about Botox
Cautiously optimistic about Botox
Finally, some good news for a change
Botox in pictures
Cluster Headaches Explained
What’s under the hat?
European Headache Alliance
Under the hat
OUCH, UK
Cluster Headache Info