🔗 Share this article

It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain erupted behind my right eye. Then came rapid shocks, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain behind one eye that lasts up to three hours.

About one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started 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 worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical medical texts suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing 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 ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

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

But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Short cycles with occasional attacks are managed with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a