🔗 Share this article

It was a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort around a single eye that persists up to three hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually start with sudden, severe agony around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life 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 cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical healing records propose unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

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

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, 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. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a