Unbearable Suffering: My Struggle Against the Enigmatic Pain of Cluster Headaches
It was a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain sprang behind my one eye. Then came quick jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.
The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with severe pain behind a single eye that lasts up to several hours.
Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.
What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.
Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical texts propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in treating the disorder note this.
In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a physician researched his complaints.
Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.
National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional attacks are handled with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.
The official guidance need updating to reflect a
