Full-Blown Agony: A Personal Battle Against the Puzzling Suffering of Cluster Headache Syndrome

It was a overcast Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain erupted behind my one eye. Then came quick jolts, like lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often affected. Attacks usually begin with abrupt, severe pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, 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 condition worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to plan life around unpredictable attacks took its effect. She especially hated 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 paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value 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 description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But leading specialists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are managed with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a