Unbearable Agony: My Fight With the Mysterious Pain of Cluster Headaches
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain bloomed behind my right eye. This was followed by quick jolts, like lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.
The attacks returned repeatedly that fall, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often start with intense pain behind a single eye that lasts up to three hours.
Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks typically start with sudden, excruciating pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.
What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children 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 winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.
Historical medical records propose unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk cures.
It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.
In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.
Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.
National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are managed with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.
The national guidelines need updating to reflect a
