Unbearable Pain: My Battle With the Puzzling Pain of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. Then came quick jolts, like lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.
The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe discomfort around one eye that lasts up to three hours.
Approximately one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Attacks usually start with abrupt, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. 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 worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the inability to plan life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.
Historical medical texts suggest unusual treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.
Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such advances, identification remains slow. Jamie Charteris's symptoms started 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 finally being diagnosed in recently, after a physician looked up his symptoms.
Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the attack passed.
Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with acute therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a
