🔗 Share this article

It was a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain erupted behind my right eye. This was followed by rapid jolts, like electric shocks. As the school day came and went, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks usually start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent 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 felt better.

In spite of such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a