Excruciating Agony: My Struggle Against the Mysterious Pain of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. It was followed by quick jolts, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.
The attacks returned repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often begin with intense discomfort around one eye that lasts up to several hours.
About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of long pain-free periods.
What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.
Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.
Ancient medical records suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading experts in treating the disorder explain this.
In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode passed.
Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some individuals.
But leading specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are managed with abortive therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.
The official guidelines need updating to reflect a
