Unbearable Agony: My Battle With the Puzzling Suffering of Cluster Headaches

It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

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

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority 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 dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a