A 9/11 first responder keeps fighting.

Joe McKay is a goofy, fun-loving family man, and a firefighter. Like many Americans, his life irreparably changed on September 11, 2001. He lost 26 people he knew, including John “Shotzy” Schardt, a fellow firefighter in Brooklyn’s Engine Co. 201, that fateful morning. A week prior, Joe had offered to cover Shotzy’s tour, but Shotzy insisted Joe take the day to attend a fundraiser golf outing. All told, his company lost four firefighters the day terrorists flew two planes through the clear blue sky into the World Trade Center. But it would take months to find their remains and give their families some closure.

“You’re digging for somebody’s remains, and you find them from time to time,” says Joe, now 52.

“That’s a person, that’s a story there. They had a family, people that loved them. You’re trying to do your job and bring something to these people that they can bury.”

Joe struggled along with his fellow New York firefighters to sift through the wreckage of Ground Zero. It was common for them to dig all day and night, be off in the morning and then go to two or three funerals. When one firefighter dies, thousands show up to pay homage to their sacrifice and mourn with their families.

In April of 2002, he finished a shift at midnight with his captain, and they went to a nearby bar for a couple of drinks. They often found solace in each other, drinking scotch, and remembering their friends. But shortly after his first few sips, a burning sensation crept up behind his eye. Joe told his captain he had a bad headache and called it a night, thinking it was caused by something toxic in the air.

Suicide headaches

The next attack woke Joe from his sleep in the firehouse and was so severe he believed it might be an aneurysm or stroke. He drove himself to the ER, where he was given painkillers and diagnosed with “unspecified headache.” The attacks kept coming several times a day, lasting around 90 minutes. A few months later, Joe was diagnosed with episodic cluster headache.

Cluster headache is also known as “suicide headaches,” and they are unique because of the sudden onset and severity of the painful attacks. The neurological condition is considered to be one of the most painful experiences a human can go through by both the patient and medical communities. The attacks can last from 15 minutes to three hours or longer and can occur up to eight times a day.

“It’s called a suicide headache because it’ll make the thought cross your mind when you’re dealing with something as bad as that, and you’re not getting help from anywhere,” says Joe, who had cycles that lasted anywhere from six weeks to seven months, with an average of six attacks each day.

“It was a bad time for the country, especially bad for us being there,” says Joe. “Then I start having this pain, and I’ve got something wrong with me… here’s one of the most painful conditions known to mankind, and there’s no cure for it, so here, take that, too… I was depressed already, and I didn’t think I could get any worse, and it got worse.”

When Freddy Krueger comes knocking

Cluster headaches are linked to circadian rhythms, which are regulated by the hypothalamus and tied to your sleep cycle, the time of day, and the seasons. One of the most insidious aspects of the condition is that the attacks are triggered by the rapid eye movement (REM) sleep stage, or “dream sleep.” In one three-week stretch, Joe couldn’t string together more than an hour and a half of sleep at a time. REM typically kicks in 90 minutes after you fall asleep, and Joe felt like a zombie, defeated and desperate.

“In the movie Nightmare on Elm Street, you couldn’t go to sleep because you were afraid that Freddy was going to come and get you in your sleep,” says Joe.

“Unfortunately, with this, you have a lot of attacks at night… They’ll wake you up. It’s like Freddy Krueger is just waiting for you to fall asleep. When you do, he sits on your chest and sinks his hot poker finger (the knife) into your eye. He sits on top of you and tries to pop your eye out of your socket and laughs at you.”

Joe’s body is exhausted and drained when the attack is over. He longs for unattainable rest because if he closes his eyes to sleep again, in 90 minutes the beast will come back.

A glimmer of hope in during dark times

Cluster headache is a rare headache disorder, affecting around one in 1,000 people. With fewer patients come fewer resources. Fortunately, Joe discovered Clusterbusters online. The nonprofit holds an annual three-day conference, which gives hundreds of patients, caregivers, and medical professionals the opportunity to meet face-to-face.

“[It was a defining moment] listening to other people talk about how they’ve lost their jobs, that not everybody has a supportive family structure, and then worst of all, dealing with the pain day-in and day-out.”

This experience gave Joe a new perspective and hope on his journey.

Access to better treatments

The trouble with treating cluster headache attacks is that they come on so quickly that you need to act within minutes. Pills and nasal sprays don’t work fast enough, which caused Joe and his daughter to have a less-than-magical experience at Disney World. “My daughter helped me get to the nurse’s station, and they ended up calling the paramedics in. But I was having a pretty bad attack, and my daughter sat and watched the whole thing go down. She was in tears seeing me,” says Joe.

Joe found that steroids could break his cycles, and a combination of sumatriptan injections and high-flow oxygen could offer him fast relief. However, the injections came with two pitfalls—insurance often limited his amount to six per month when he could use that many in a day, and they could cause “rebound” attacks the more he used them.

High-flow oxygen is the most effective and first-line treatment for cluster headaches, but Joe and countless others like him have trouble getting affordable access to it. His insurance through the Fire Department covered the oxygen at first, but when his episodic cycles worsened and he had to retire, he was denied coverage.

“I was making a lot of phone calls and pleading with a lot of different people to get the oxygen again. I was facing a dead-end everywhere I went,” says Joe. “It was difficult for me to find anywhere to obtain it even with a prescription, but I ended up getting a charitable foundation to pay for my oxygen.”

From surviving to thriving

Joe’s wife and two daughters have been a great support system for him on the steep journey to pain relief. He’s made many lifestyle changes to improve his episodic cluster headaches. He retired from the FDNY after realizing the exposure to smoke, long shifts, and adrenaline spikes were exacerbating the attacks. Joe avoids drinking, stress, and maintains a strict sleep cycle to avoid pain, even if he’s in remission, because he doesn’t want to “poke the beast.” He lives in fear of the next attack and always has an oxygen tank on hand.

The harrowing trials of being a 9/11 firefighter—coupled with navigating one of the most painful conditions­—have only strengthened Joe’s belief in helping others. He travels several times a year to advocate for 9/11 firefighters as they face mounting health concerns from the exposure at Ground Zero as well as for cluster headache patients.

“I will always be a firefighter,” says Joe. “When I’m confronted with someone who needs help, like most first responders, I will step up.”

—by Ashley Hattle

RESOURCES

Clusterbusters: clusterbusters.org
Cluster Headache Facebook Private Support Group:
bit.ly/fbsupport-cluster
Alliance for Headache Disorders Advocacy:
allianceforheadacheadvocacy.org