Excruciating Agony: My Struggle Against the Enigmatic Pain of Cluster Headache Syndrome

It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. It was followed by quick stabs, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort around a single eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often affected. Attacks usually start with sudden, severe agony around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She especially hated 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 paralysis caused by the most severe episodes. “It robs 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 throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a