🔗 Share this article

It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain bloomed behind my one eye. It was followed by rapid shocks, like electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain behind a single eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional attacks are managed with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a