Unbearable Agony: A Personal Battle Against the Mysterious Suffering of Cluster Headaches

It was a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October 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 pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around a single eye that persists up to several hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional attacks are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a