Full-Blown Pain: A Personal Battle Against the Enigmatic Pain of Cluster Headache Syndrome
It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.
The attacks appeared frequently that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe discomfort behind a single eye that persists up to several hours.
About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, severe pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.
What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient 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 a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.
Still, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, 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 robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.
Ancient healing texts propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.
It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.
The disorder were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Leading experts in diagnosing the condition explain this.
In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his complaints.
Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced 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 molars extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack passed.
National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.
But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.
The official guidance need updating to reflect a
