Unbearable Agony: My Struggle With the Mysterious Pain of Cluster Headaches
It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.
The attacks returned frequently that autumn, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with intense discomfort behind a single eye that persists up to three hours.
About one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, excruciating agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of long pain-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.
Still, the failure 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 looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.
Ancient medical records propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.
Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.
In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation 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, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack eased.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some individuals.
But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.
The official guidelines need revising to reflect a
