🔗 Share this article

It was a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my right eye. Then came rapid shocks, similar to electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort around one eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical records propose unusual remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading experts in treating the condition note this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? 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 specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. 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 activity.

The national guidelines need updating to reflect a