🔗 Share this article

It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. It was followed by quick shocks, like electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense discomfort around one eye that lasts up to three hours.

About one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually begin with sudden, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, 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 steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

---

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

Ancient healing texts propose bizarre remedies for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent experts in treating the disorder note this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a