Excruciating Pain: My Battle Against the Mysterious Suffering of Cluster Headache Syndrome
It began on a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. This was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.
This condition typically begin with severe pain around one eye that persists for three hours.
Approximately one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches typically start with abrupt, severe pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “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 dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the inability to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.
Historical healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.
It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only officially classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in treating the condition note this.
In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.
Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.
But leading neurologists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are managed with abortive treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
