Unbearable Suffering: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. It was followed by quick jolts, like lightning bolts. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.
The attacks returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically start with severe pain behind one eye that lasts for several hours.
About 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks usually begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.
Historical healing texts propose unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only formally classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading experts in treating the condition note this.
In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a doctor looked up his complaints.
Neurologists 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,” one says. He works by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed 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 features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.
National guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some people.
But consultant neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with infrequent attacks are managed with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
