🔗 Share this article

It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my right eye. This was followed by quick jolts, like electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort around one eye that lasts for three hours.

About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially 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 worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records suggest unusual treatments for what modern observers would classify as a headache disorder. 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 first detailed description of a cluster headache. 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 classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for most 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 dentists misinterpreted her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack eased.

Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief cycles with occasional episodes are handled with acute therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidance need updating to reflect a