Unbearable Agony: My Battle With the Mysterious Pain of Cluster Headaches
It was a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. This was followed by quick stabs, like electric shocks. As the school day came and went, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with intense pain behind a single eye that persists up to several hours.
Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically start with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of long pain-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes 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 took clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, 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 steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an evil entity who afflicted his victims' heads.
Historical healing texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.
In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack eased.
Official guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some people.
But leading neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Short bouts with infrequent episodes are managed with acute therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
