Full-Blown Pain: My Battle With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.
The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe pain behind a single eye that persists up to three hours.
About one in 1,000 people are affected by the condition, and men are more frequently affected. Attacks usually start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things worse. After having sherry 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 eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Still, the inability to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.
Historical medical texts propose bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.
It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the condition explain this.
In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician researched his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the attack eased.
Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known individuals.
But leading specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The national guidance need revising to reflect a
