🔗 Share this article

It began on a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. It was followed by rapid jolts, like electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain around one eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks typically start with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain 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 looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by global 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 supplies blood to the head. Leading experts in treating the condition note this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode eased.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading neurologists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short bouts with occasional episodes are handled with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a