Unbearable Agony: My Struggle Against the Mysterious Suffering of Cluster Headaches
It was a dreary weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. Then came quick shocks, like electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.
The headaches returned frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often start with intense pain behind a single eye that persists up to several hours.
Approximately 1 in 1000 people suffer by the condition, and men are more often affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.
What unites patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.
Still, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children 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 recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his victims' heads.
Ancient healing records propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the condition note this.
In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.
Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode eased.
National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.
But leading specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many 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 guidance need updating to reflect a
