Unbearable Suffering: My Struggle With the Puzzling Pain of Cluster Headaches
It began on a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. Then came quick stabs, like lightning bolts. As each class progressed, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff 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 establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with intense pain behind a single eye that lasts up to three hours.
Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks typically start with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.
What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil entity who attacked his victims' heads.
Ancient healing texts suggest unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.
The disorder were only officially classified by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading experts in diagnosing the condition explain this.
In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.
Official guidance on treatment recommend that sufferers are offered high-flow 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 bouts of well-known individuals.
But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.
The official guidance need updating to reflect a