🔗 Share this article

It was a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. Then came rapid stabs, like lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support finally 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 time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

---

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

Historical medical texts suggest bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists 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,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are handled with acute therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a