🔗 Share this article

It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my one eye. It was followed by rapid shocks, like electric shocks. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with intense pain around one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked 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 paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. 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 pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidance on management recommend 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 choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a