🔗 Share this article

It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain erupted behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe pain around one 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, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after 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 remembers winning tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical records suggest bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, 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 medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, 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 progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen therapy and medication until the attack passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Short cycles with occasional attacks are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a