Excruciating Agony: My Battle Against the Puzzling Pain of Cluster Headache Syndrome
It was a overcast Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation sprang behind my one eye. Then came quick jolts, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The attacks returned frequently that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often start with intense pain around a single eye that lasts up to several hours.
Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, severe agony around one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of long pain-free periods.
What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.
Still, the inability to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable 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 small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.
Ancient healing records propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.
Cluster headaches were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading specialists in treating the condition explain this.
In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen therapy and medication until the episode eased.
Official guidelines on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.
But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.
The official guidance need revising to reflect a
