🔗 Share this article

It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. It was followed by quick jolts, like electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain behind a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically begin with abrupt, severe pain focused on a single eye that peaks 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, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable 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 small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, 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, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with abortive therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a