Unbearable Pain: A Personal Struggle Against the Enigmatic Pain of Cluster Headaches
It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. It was followed by quick jolts, like electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe discomfort around a single eye that lasts up to three hours.
About one in 1,000 people are affected by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, severe agony focused on one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.
What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms 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 facility.
Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Ancient medical records propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
Cluster headaches were only officially recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading experts in treating the disorder note this.
In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed increased activity 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. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode passed.
National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.
But leading neurologists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with infrequent attacks are managed with acute treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
