🔗 Share this article

It began on a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my one eye. This was followed by quick shocks, like electric shocks. As the school day progressed, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate 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 doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind a single eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in treating the condition note this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. 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 sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the episode passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a