🔗 Share this article

It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, severe pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started 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 symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical healing records suggest unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works 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 appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a