Cluster Hero and Pain Warrior
Anyone who’s been a fan of the Boston Red Sox remembers exactly where they were when the Sox won the World Series in 2004, ending an 86-year drought.
Eric Cohen, a die-hard Red Sox fan, watched from the left field bleachers for the clinching game, truly a dream come true. The next day Eric expected to continue celebrating this momentous victory. Instead he had his first cluster attack.
“I have had gall stones, kidney stones, and broken bones, and none are as painful,”
says Eric. Cluster attacks are characterized by excruciating, one-sided pain focused around the eye or temple, droopy eyelid, red or puffy eyes, tearing, runny nose, and pale skin. Unlike a migraine attack, a cluster attack often gives sufferers the urge to rock back and forth or pace. Some find loud music or literally banging their head against a wall gives them a way to funnel their energy.
This happens to Eric three to six times per day, lasting 45 minutes to two hours at a time, if left untreated.
Those who have this disease typically experience multiple attacks in clusters, over a series of weeks or even months, followed by prolonged periods of no attacks—hence the term cluster. Unfortunately, Eric’s condition is chronic. He never has a day without multiple attacks.
Many find the medical term “cluster headaches” offensive. The word “headache” completely diminishes their pain. This disease is said to be the most painful medical condition known, affecting one in every 1,000 Americans, mostly male. Eric calls them cluster nerve attacks because it feels like the nerves behind his eyes are on fire.
Limited treatment options
Triptans, a rescue medication, can help to stop an attack if used at the earliest sign of a cluster. Eric has 70 to 100 attacks per month. Insurance typically limits triptan medications to six or fewer per month. There is no prescription medication available that is safe to treat each and every attack he endures.
The most widely used treatment for cluster is high-flow oxygen. However, oxygen for the treatment of cluster attacks is not widely covered by insurers. The fact that oxygen is being denied to people with a condition referred to as “suicide headaches” is an ongoing battle.
There are seven members of the Cohen household, almost enough to comprise a baseball team. Eric and his wife, Lori, have two biological children, Ryan and Alexander. They also decided their home had enough love to share and have adopted three children with special needs. Katherine was the first to join the family in 2007. In 2016, Rachel and Danny rounded out the Cohen team.
The Cohens are especially equipped to handle the challenges their children face: Eric works with children who have special needs and Lori is a doctor. It’s clear that he is incredibly proud of his family. Having a support system is critical for anyone with a chronic illness.
Support from outside the family unit is also important. Social media plays a huge role in the cluster community. Eric has formed special bonds through a Facebook group called Cluster Headaches. One person who has made a huge difference in his life—who he credits with saving his sanity—is also named Eric: “He gave me advice many times and it always helped. He was support for me on every level and is a trusted resource for advice and information.”
Eric is now an administrator in the same Facebook group, helping others like his close friend did for him. While he may not realize it, he has made a huge impact in other’s lives.
“He gives everything even though he’s struggling pretty hard with this evil disease,” says Eileen Brewer, director of education and communication for Clusterbusters.org. “I’m blown away by his spirit, generosity, and heart. If ever there was a person to be inspired by, it’s Eric.”
Clusterbusters is one of the largest and most active cluster patient support groups. For 12 years, the organization has hosted an annual national conference that brings together people with cluster disease, their families, and medical professionals. The event has become an important yearly gathering of the cluster tribe. The 2017 conference welcomed a record-breaking 200 attendees from six different countries.
Eric describes the conference as “a family reunion and an informational explosion all in one. From the moment I get to the hotel until the moment I leave, I am surrounded by love and understanding.”
Eric cherishes a picture taken with lifelong friends he was fortunate to meet in person at one Clusterbusters event. “This was a really emotional day for me,” he says. “It was the end of the conference and those guys are brothers that I wouldn’t see again for at least a year. I wish I could put into words what these people all mean to me. I have an amazing family at home—and an amazing cluster headache family.”
No pictures, please
“I don’t have pictures of me in pain. I choose not to take pain pictures because I don’t want that to be a moment to remember,” says Eric.
Many feel the same way. It can be triggering to watch someone else have a cluster attack, especially if they themselves are in a period of remission. Even during a supportive conference like Clusterbusters, it is normal for a person having an attack to find a corner and ride out the immense pain. Those who can, keep tabs on a person during this situation. The reality is that the fear of the next attack can be paralyzing. Too many people who have cluster attacks have taken their own lives.
In 2015, many of Eric’s cluster family went to a tattoo parlor in Chicago and got matching tattoos. The semicolon in the middle of all their tattoos represents a suicide prevention and awareness movement, which is explained by Project Semicolon: “A semicolon is used when an author could’ve chosen to end their sentence but chose not to. The author is you and the sentence is your life.”
Victory in acceptance
“There was a day a few years ago that I gave up ever being pain-free for an entire day,” Eric says. “It was sad and liberating at the same time. I got rid of the fear of the pain and replaced it with being less enthusiastic about things. I gave up on taking anything for my clusters and decided to ride it out. It brought me to my lowest point emotionally, but also made me stronger moving forward.”
Sometimes victory doesn’t include a World Series trophy. Acceptance is victory in and of itself.
Words of wisdom
Eric has lived for over a decade with chronic cluster disease. Within that time, he has gained insights from his own experience and from others in the cluster family. For anyone newly diagnosed with cluster headache, he wishes someone had told him the following things:
- Network online and in person.
- Find support for yourself, and for your family and friends.
- Find a good doctor who has extensive knowledge in treating cluster patients.
- Research daily, then share information with your doctor.
Cluster Headaches Facebook: bit.ly/clustersFB
Project Semicolon: projectsemicolon.com