Unbearable Agony: My Fight Against the Enigmatic Pain of Cluster Headaches
It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my right eye. This was followed by rapid shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.
The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe discomfort around a single eye that lasts for several hours.
Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Attacks typically start with sudden, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of extended pain-free periods.
What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.
Historical medical records propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in treating the disorder note this.
In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a physician researched his complaints.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack eased.
National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.
But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short cycles with occasional episodes are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.
The national guidelines need updating to reflect a
