Excruciating Pain: My Struggle Against the Enigmatic Pain of Cluster Headaches
It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. It was followed by quick stabs, like electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.
The attacks appeared frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with severe discomfort behind a single eye that lasts up to three hours.
About 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the absence of long pain-free periods.
What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Ancient healing texts suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Leading specialists in treating the condition explain 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 data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one 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.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.
National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent episodes are managed with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. 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 decreases nerve signals.
The official guidance need updating to reflect a
