🔗 Share this article

It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain around one eye that persists for several hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Attacks typically begin with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

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

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

---

Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

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

Cluster headaches were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with abortive treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a