Unbearable Agony: My Fight With the Puzzling Pain of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. Then came rapid stabs, like electric shocks. As each class came and went, the discomfort eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.
The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with severe pain around a single eye that persists up to three hours.
Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.
What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the inability to plan daily activities around erratic pain took its effect. She especially hated 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 robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.
Ancient healing texts suggest bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.
National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.
But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.
The national guidelines need revising to reflect a