Unbearable Suffering: My Struggle Against the Puzzling Pain of Cluster Headaches

It began on a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. It was followed by rapid stabs, like lightning bolts. As each class progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In 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 around a single eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support eventually 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 moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked 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 headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had induced 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 circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are managed with acute therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a