Unbearable Agony: My Battle Against the Enigmatic Suffering of Cluster Headaches
It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.
The headaches appeared frequently that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically start with severe discomfort behind a single eye that persists up to three hours.
Approximately one in 1,000 people suffer by the condition, and men are more often affected. Attacks usually begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.
What unites patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.
Still, the failure to plan life around erratic attacks took its toll. She particularly hated being unable to plan social events, 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 robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.
Ancient healing records propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Leading specialists in treating the condition note this.
In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack passed.
National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.
But leading specialists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidelines need updating to reflect a
