🔗 Share this article

It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. It was followed by quick stabs, similar to lightning bolts. As the school day progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain around one eye that lasts for three hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize daily activities around erratic 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 cared for by her family during the paralysis caused by the most severe 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 the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published 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 discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with infrequent attacks are managed with acute therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a