🔗 Share this article

It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the pain eased and then returned with greater force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around one eye that lasts up to several hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, 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-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent attacks are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a