🔗 Share this article

It began on a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Attacks typically begin with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the approach.” Brief bouts with occasional attacks are handled with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a