Unbearable Suffering: A Personal Battle Against the Enigmatic Suffering of Cluster Headaches
It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. Then came rapid shocks, like lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The attacks appeared frequently that autumn, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with intense pain around one eye that lasts up to several hours.
About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. 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 deteriorated through her youth. Alcohol in her adolescence, similar to several 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 parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, 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 steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.
Ancient medical records suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent specialists in diagnosing the condition note this.
In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and medication until the attack passed.
National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.
But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief bouts with occasional episodes are managed with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.
The national guidance need updating to reflect a
