Unbearable Agony: A Personal Fight Against the Enigmatic Suffering of Cluster Headaches
It began on a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.
The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense discomfort behind one eye that persists up to several hours.
About one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended pain-free periods.
What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate 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 documented across the ages. “The first description 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.
Ancient healing texts suggest unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Leading specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a doctor researched his complaints.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists 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 early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.
Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some people.
But consultant specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The national guidelines need updating to reflect a
