Full-Blown Pain: A Personal Battle With the Mysterious Pain of Cluster Headache Syndrome
It began on a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. This was followed by quick jolts, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.
The attacks appeared frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.
This condition typically start with intense discomfort around one eye that lasts up to three hours.
About one in 1,000 individuals suffer by the condition, and males are more often affected. Attacks usually start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.
What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.
Still, the inability to organize daily activities around unpredictable pain took its toll. She particularly hated 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 incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.
Historical medical records propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious cures.
It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially 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 issue with a key blood vessel which delivers blood to the brain. Prominent specialists in treating the condition note this.
In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. 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 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.
Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some individuals.
But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
