🔗 Share this article

It began on a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort around one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Cluster headaches typically begin with sudden, severe pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to plan life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

---

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

Historical medical records propose unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode passed.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a