🔗 Share this article

It began on a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. It was followed by quick jolts, like lightning bolts. As each class came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort around one eye that persists for three hours.

About one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with sudden, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing texts suggest unusual treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are handled with acute therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a