🔗 Share this article

It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort behind one eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with abrupt, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Historical healing texts suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. 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 head. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed increased activity 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.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional attacks are managed with acute therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a