Excruciating Agony: My Struggle With the Enigmatic Pain of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my right eye. Then came quick stabs, like electric shocks. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.
The headaches returned repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by mid-morning. In 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 pain around one eye that persists up to three hours.
About one in 1,000 people are affected by the disorder, and males are more often affected. Attacks typically begin with abrupt, excruciating agony 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, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.
What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.
One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.
Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value 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 across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.
Historical medical texts propose bizarre treatments for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.
The disorder were only formally classified by global headache societies in 1988. From the 1960s to the 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 disorder note this.
In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.
Official guidance on management advise that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a
