Excruciating Pain: A Personal Fight With the Puzzling Pain of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. This was followed by rapid jolts, similar to electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.
The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with intense pain behind one eye that persists up to three hours.
About 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches typically begin with abrupt, excruciating pain focused on a single 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 associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked 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 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 recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.
Historical medical texts propose bizarre remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
Cluster headaches were only officially classified by international medical societies 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 artery that supplies blood to the brain. Leading specialists in treating the condition note this.
In 1998, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his complaints.
Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.
National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But leading neurologists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are managed with abortive therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.
The national guidance need revising to reflect a
