Excruciating Suffering: My Battle With the Enigmatic Pain of Cluster Headaches
It was a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain erupted behind my one eye. This was followed by rapid jolts, similar to electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.
The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically begin with intense pain around a single eye that lasts up to several hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Attacks typically start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.
Still, the inability to organize life around erratic attacks took its toll. She particularly hated 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 most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Historical medical records propose unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in treating the condition explain this.
In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.
Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode eased.
Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some people.
But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The national guidance need updating to reflect a
