Unbearable Agony: A Personal Fight Against the Mysterious Suffering of Cluster Headaches

It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain behind a single eye that lasts for three hours.

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe pain around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “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, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers barely 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 husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She especially 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 incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” 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 part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode passed.

National guidance on management recommend that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with occasional episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a