Unbearable Agony: My Fight Against the Mysterious Suffering of Cluster Headaches
It was a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. Then came rapid shocks, like lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The headaches returned frequently that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense discomfort around a single eye that persists for three hours.
About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.
What unites patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.
One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the inability to plan life around erratic attacks 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 family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Historical medical records suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.
In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack eased.
Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known people.
But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Short cycles with infrequent attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
