🔗 Share this article

It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain erupted behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind a single eye that lasts up to three hours.

About 1 in 1000 people suffer by the condition, and men are more often affected. Attacks typically begin with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang 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 school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to plan life around unpredictable pain 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 children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate 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 documented throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the episode eased.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with acute therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a