Unbearable Pain: A Personal Battle Against the Enigmatic Pain of Cluster Headaches
It began on a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain sprang behind my right eye. It was followed by rapid jolts, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.
The headaches returned frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with intense pain behind one eye that lasts for three hours.
About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.
Historical healing texts propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.
The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.
In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.
National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.
But consultant specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.
The national guidelines need updating to reflect a
