🔗 Share this article

It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain erupted behind my one eye. This was followed by quick stabs, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain behind a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical medical texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk cures.

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

Cluster headaches were only officially recognised by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen treatment and medication until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are managed with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a