🔗 Share this article

It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically start with sudden, severe agony around one eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan outings, 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 recalls obtaining tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been described across history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician 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 fixed hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the condition note this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode passed.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a