🔗 Share this article

It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came quick shocks, like electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort behind a single eye that lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with abrupt, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part 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 unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical healing texts suggest bizarre remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed 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 certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced 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 teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack passed.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered 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 neurologists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with occasional episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a