🔗 Share this article

It was a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. This was followed by quick shocks, like electric shocks. As the school day came and went, the pain subsided and then returned with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind one eye that lasts up to several hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term 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 put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of 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 attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession 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 bout in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some people.

But leading specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are handled with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a