Excruciating Agony: My Battle Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. This was followed by quick jolts, reminiscent of 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 colleague with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense pain behind a single eye that lasts for three hours.
About 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Attacks usually start with sudden, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.
One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated behavior. Support 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 office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, 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 small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.
Historical healing texts propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.
The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.
In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. One man's symptoms started 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 finally being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.
National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some people.
But leading specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are handled with abortive therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.
The official guidelines need revising to reflect a
