Excruciating Pain: My Fight With the Enigmatic Suffering of Cluster Headaches
It began on a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation erupted behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.
The attacks returned repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with severe pain around one eye that lasts up to several hours.
About 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks usually begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the failure to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple 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 facility.
Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.
Ancient medical records propose unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the condition explain this.
In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, 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.
Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, 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 time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack passed.
National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The national guidelines need updating to reflect a
