Looking to a better future.
Chase Dubose is a freshman in high school who enjoys hanging out with his friends and being a part of the bowling team. To any outsider, Chase is a healthy 15-year-old, but four years ago, his life was ripped apart by a form of Trigeminal Autonomic Cephalalgia, known as cluster headache. Chase is part of the 85-90 percent of “clusterheads” who are episodic, meaning he goes into remission for several months before attacks begin again.
“When Chase had his first cluster, lasting three months, as a mother, I did not know if and when the attacks would stop,” explains Mac Dubose, Chase’s mother. “Watching your son in immense pain day after day was terrifying. I felt helpless to stop the pain.”
What are cluster headache attacks?
Cluster headache (also referred to as cluster disease) is characterized by short-lived attacks of lancing or stabbing pain in the temple and eye that are strictly one-sided. This condition is nicknamed “suicide headaches” because suicidal ideations and attempts occur at 20 times the national average, which is attributed to the extreme and sudden nature of the pain. Chase had his first attack on January 15, 2015, at age 11.
“It feels like a knife stabbing behind my right eye,” says Chase. “When I had an attack, I couldn’t think of anything but the horrible pain.”
After a few days of the initial episodic cycle, a pattern emerged: The attacks came on every day at 7:30 a.m. and 7:30 p.m., and lasted for 90 minutes. One of the defining features of cluster headache is restlessness. Similar to the way one shakes a finger after slamming it in a car door, clusterheads often resort to hitting their heads with an object or their fist. Chase would writhe in pain nonstop during an attack, usually ending with him shaking in bed.
“At the worst of his attacks, he would pass out from the pain,” shares Mac. “He would be in such immense pain, and then he would stop for a period of about 30 seconds to 45 seconds on average and then he would wake up and go right back into it. I would like it when he passed out because it would be a moment of him not having this [pain].”
Brain tumor or cluster headaches?
Chase also experiences migraine disease, and both he and Mac knew right away they were dealing with something wildly different. To Chase, a migraine feels like “a balloon expanding in your head, a throbbing in the forehead with sensitivity to light and sound,” whereas “cluster headaches are an extremely intense feeling like a knife stabbing the back of the right eye. The pain can be unbearable.”
Mac was convinced something more insidious was happening to Chase. With the level of pain and cyclical nature of the attacks, she believed it could be a brain tumor. Three days after the first attack, Chase ended up in the emergency room where they ordered an MRI. The doctor said Chase’s brain looked great and there wasn’t a visible problem.
“He basically hands me this piece of paper that says the diagnosis is cluster headache,” says Mac. “I thought—Great. Easy enough. Now, what do we take? What’s the remedy? We realized fairly quickly that this wasn’t something that’s going to go away on its own.”
Cluster headaches offer no visible markers to friends, family members, and strangers that indicate you’re sick. However, during a cluster attack, the affected side becomes flush, the eyelid swells and droops, the pupil constricts, the eye tears, and the nose is congested or runny. To some, this appears to be a stroke. Once the pain subsides, the face returns to normal, though the psychological scars remain.
The long road to pain relief
There are no medications developed to treat cluster attacks specifically. Clusterheads are left with “hand-me-down” treatments including anti-seizure drugs, anti-inflammatories, antipsychotics, migraine medications, and steroids. Chase tried a litany of medications and treatments. Mac felt that they were “grasping at straws” to find relief—lifestyle changes, holistic treatments, strict sleeping schedule, IV treatments, Vitamin D3 regimen. They cut out MSG, nitrates, cheese, artificial sweeteners, and kept stress to a minimum, but nothing seemed to work.
“When he was in cycle for the three months, he was just so out of it,” shares Mac. “But really [the meds] didn’t change anything. None of the medicines were helping with anything and being on the steroids made me very nervous because there’s a whole other side-effect issue with all of it.”
The most effective treatment for cluster headaches is high-flow oxygen, which is a significant issue because insurance companies and oxygen suppliers often deny patients even though they have a prescription. Mac found a local supplier who was willing to sell the oxygen tanks to her without insurance involvement. Oxygen therapy for clusters requires a specific liter flow (15-25 lpm), non-rebreather mask, and one of two breathing techniques.
PTS and managing life with cluster attacks
While Chase struggled through 2-3 attacks every day, his friends and school life continued. The episodic cycles started the same time each year, almost to the exact date—January through March—which kept him from school, sports, and friends. Mac was able to get Chase enrolled in an Individualized Education Program, which helps students continue their studies despite health issues.
“The worst part was when I was home in the winter,” shares Chase. “I felt like my friends were doing things that I could not do. If I did see my friends, sometimes it would end abruptly because I started to have an attack and had to leave.”
The isolation that comes with cluster disease, and many other invisible illnesses, leaves patients and their families at a loss, living in fear of the next cycle. Clusterheads can develop post-traumatic stress (PTS) symptoms due to the trauma of each attack. They avoid making plans, and some develop agoraphobic tendencies because they’re afraid of being in public during a cluster headache attack.
“You’re always on your guard for the next attack,” Mac explains. “You sort of live your life that way, and I think a lot of people who have either conditions or terminal illnesses [know] this is reality. This is the way that you live life because you’re not sure that you’re completely out of the woods.”
Chase has been in remission for two years now. “We hope he stays in remission, but are acutely aware that the cluster headaches may return someday in the future,” Mac says.
Finding a support system
During this harrowing time of uncertainty and despair, Mac stumbled upon an advocacy group that hosts annual conferences for cluster headache patients. Clusterbusters, Inc. is a nonprofit organization founded to further research, education, awareness, and advocacy for cluster headaches. Mac has attended several of the Clusterbusters conferences.
“A strong support system is vital: friends, family, doctors,” Mac notes. “We find other sufferers in the cluster headache community to be especially important.”
Clusterbusters offers regional support groups and has an extensive online forum available to help at all hours of the day.
Every pain-free day is a blessing
Today Chase is a thriving teenager who enjoys every minute of pain-free time. He does not allow his cluster headache nor his migraine to define him. This terrifying journey from the first attack to remission has changed him in many ways. He, his mother, and his 18-year-old sister, Layne, all believe every day out of an episodic cycle is a blessing.
Shares Mac, “We know there are good days and not-so-good days. Nothing is taken for granted… Chase has taught me not to live in fear, but to accept the moment and look forward to a better future.”