It Happened To Me Contest Entry: I Get Cluster Headaches

Cluster headaches are very rare -- less than .1% of the population will ever experience one -- and many doctors agree that it is the worst type of pain a human will ever experience.
Publish date:
February 12, 2013
pain, sick, ihtm contest, ihtm raw

[If you like this IHTM contest entry, comment to that effect below and that will help the writer win big money. Feel free to critique below, so we can weigh that in our decision. -- Jane]

By Katie Donovan

Looking back, there was nothing to distinguish that first day from any other before it. There were no twinges, no little tweaks that could have been clues that my body was about to betray me.

It was Columbus Day weekend. My husband was away on a work retreat, so I was alone for the first time since our wedding two months earlier. I came home early after meeting a friend for drinks, making sure to double-lock our door against any outside intruders. But, like in all good horror stories, the call came from inside the house.

At 3 am, pain tore me out of sleep. My eyeball felt like it was being savagely twisted. I stumbled into the bathroom expecting to see blood on my face. Instead, there was nothing. Nothing abnormal at all.

I went back to sleep until 5 am, when the pain returned along with an intense drilling in my head and my teeth. I writhed around on my bed, unable to fall asleep until a few minutes before the alarm was scheduled to go off.

When I woke up I thought it was a dream until I saw the open bottle of ibuprofen on the counter. Still, I shrugged it off as a random freak occurrence and went to work. I even brought it up to people as “this weird thing that happened to my eye last night,” and continued with plans to have some friends over for dinner. We ate homemade lasagna and collectively went through a few bottles of wine before calling it a night.

This time, the pain took over the entire left hemisphere of my head. It felt like my skull had broken into fragments and was piercing my brain. It was unrelenting -- not a throb, not dull, but sharp and purposeful. I ran to the bathroom and threw up the night’s dinner into the toilet. I debated calling for an ambulance but didn’t think I could wait for them to get to the apartment. So around 5 am, I staggered into the DC night, hailed a cab and went to the hospital.

I was ushered back quickly. They asked me at least three times if I was a victim of domestic abuse and if my eyelid “normally looked like that,” but I was in too much pain to even understand the questions. They ran a few cursory tests, but finding nothing wrong besides the obvious presence of pain, they assumed it was just a migraine and gave me some Percocet.

As I was leaving the hospital, I stopped in the bathroom to splash water on my face. As I patted it dry, I made eye contact with myself in the mirror and gawked. The entire left side of my face was swollen and my eyelid was, as they phrased it, “drooping considerably.” Shaking, I decided to let my husband know I was having some health issues.

He came straight home, bearing pain medication and, since we were still working off the assumption that I had an extreme light sensitivity that triggered migraines, an eye patch. We cuddled on the couch and made pirate jokes until it was time for bed.

Right around 3 am, it happened again. This time it was like all the liquid in my body wanted to leave at the same time. I was sweating profusely, I had to urinate and I was throwing up everywhere. My husband found me naked on the couch, wrapped in a blanket and rocking back and forth.

To the hospital again, where he endured some side-eye from attendants who saw my once-again swollen face. This time, though, I was lucky enough to have the one doctor who didn’t just assume it was a migraine, and who asked me the right questions:

“First, does this happen at the same time every night?”

“It’s just on the left side? Does it ever hit the right?”

“And does it FEEL like a migraine?”

“This is interesting,” he said. (Always a good sign, when your doctor thinks your condition is interesting.) “I think you have cluster headaches.”

He hooked me up to an oxygen tank, along with an IV filled with saline and pain killers. The pain, instead of lasting for hours, now abated within 15 minutes.

Cluster headaches are very rare -- less than .1% of the population will ever experience one -- and many doctors agree that it is the worst type of pain a human will ever experience. In fact, many of the doctors I saw during that first month made some joking reference to how I would now have no problem giving birth. (All men, go figure.)

Comparing a migraine to a cluster headache is like comparing a stubbed toe to a broken leg. There is no cure and the cause is still unknown. However, some scientists theorize that they are caused by an abnormality in the hypothalamus, the part of your brain that regulates your biological clock, because of their tendency to strike at both the same time every night and the same time of year. Because of this and their tendency to wake victims from a deep sleep, they are nicknamed “alarm clock headaches.”

A much darker nickname for cluster headaches, however, is “suicide headaches,” because before treatments were discovered, patients were often put on suicide watch. Some still are. I never really understood why people would choose death over pain, even at the end of their lives. After being alone in my apartment in the dark with that pain, I understand.

That first month was the darkest time of my life. Even though I saw a very good neurologist, it took my body over 10 days to adjust to medication, and in those 10 days I was back in the hospital three more times. On one of those visits, a doctor yelled at me to “get these under control,” as though my recurring appearance in the emergency room was due to mental weakness.

I discovered that a rise in my body temperature could trigger a headache. I love to run and swim, but now I could do nothing but sit. I couldn’t drink. I couldn’t dance. I couldn’t celebrate being young and in love.

I grew depressed. I gained weight. I was afraid to go to sleep. Really, I grew old. I remember apologizing to my husband, in between sobs, for no longer being the woman he married. I felt like my life had been taken from me.

Things didn’t turn around until I discovered an online forum of fellow sufferers around the world. It was here that I was advised to get a home oxygen tank. Now, instead of packing up an emergency bag before bed in case I had to go to the hospital, I could just go to sleep with the knowledge that oxygen, the only thing that really stopped the pain, was within reach.

Even though my husband resented our bedroom looking like a nursing home, I happily named our new, green, four-foot friend Oscar, and started to have a pain-free existence.

It wasn’t until late April when the sun came back out that I felt safe from attack. I was determined to embrace my life and reclaim my body as my own. Looking at the calendar, I decided to sign up for a triathlon in late September on my 30th birthday. That would still give me a cushion, I thought, in case the attacks came back again in October.

In early September, though, on a trip for work, I felt a familiar twinge in my eye. I panicked. That entire weekend was a succession of panic attacks, and I couldn’t relax my body into sleep. The trip was a disaster. As soon as I got home, though, I made a decision: I may not be able to control the pain, but I can control how I react to it.

And so I ran that triathlon. Afterwards, I sat in the back of my parents car and breathed in the 100% oxygen from the travel tank we rented. I had to use it three more times that night, but I also caught the headaches before they got really bad. I was in control.

Things aren’t perfect. I still have trouble sleeping if I’m in a strange place, worrying and plotting how to get to the hospital should something happen. Insurance doesn’t always cover my oxygen, so even though I would prefer to have it around at all times, since I’m not currently in cycle, we had to get rid of the tank.

Cluster headaches don’t leave a mark in the traditional sense. You can’t see them on a CAT scan. There is no break, no malignancy, no rupture. But they leave their mark just the same.

I have been headache-free for four months. I may have another one tomorrow, or I may never have another one again. But I will always remember the metallic taste of pain and the fear of facing the unknown at 3 am. And I will know that I can survive.