Excruciating Agony: My Battle With the Enigmatic Suffering of Cluster Headaches
It began on a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.
The headaches returned frequently that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with severe pain around one eye that lasts for several hours.
About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.
What unites patients is the intensity. One study scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after 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 recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.
Historical medical records suggest bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
The disorder were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder note this.
In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.
Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen treatment and medication until the attack passed.
Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some people.
But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive 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 nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.
The official guidance need revising to reflect a
