Excruciating Suffering: A Personal Struggle With the Puzzling Pain of Cluster Headache Syndrome
It was a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. Then came rapid shocks, similar to electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.
The headaches appeared frequently that fall, and once more in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe pain around a single eye that lasts up to several hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with sudden, severe agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of long pain-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated 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 took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.
Historical healing records suggest bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.
The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.
In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician researched his complaints.
Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate 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 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.
Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.
But leading neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve activity.
The official guidance need updating to reflect a
