🔗 Share this article

It was a gloomy Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my one eye. It was followed by quick jolts, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks usually start with sudden, excruciating agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate 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 documented across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts 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 observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments 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 “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers released the findings 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 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, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist 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 the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many 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 activity.

The official guidance need revising to reflect a