Full-Blown Agony: My Battle Against the Mysterious Suffering of Cluster Headaches
It began on a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. Then came rapid stabs, like lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often begin with severe discomfort behind one eye that persists up to several hours.
About one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically start with abrupt, excruciating pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.
What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the inability to plan life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Ancient healing texts propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.
Cluster headaches were only officially recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.
In 1998, scientists released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured 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 deactivation when they felt better.
In spite of such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode eased.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known people.
But leading neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with abortive therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.
The national guidance need updating to reflect a
