🔗 Share this article

It was a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. Then came rapid jolts, like electric shocks. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Attacks usually start with sudden, severe agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a