Unbearable Agony: My Fight With the Enigmatic Pain of Cluster Headaches
It began on a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain sprang behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.
The attacks appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
This condition often start with intense discomfort behind a single eye that persists up to several hours.
About one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long pain-free periods.
What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his sufferers' heads.
Ancient healing records propose bizarre treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
The disorder were only officially classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the disorder note this.
In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode passed.
National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some people.
But consultant specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short cycles with occasional attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.
The national guidelines need revising to reflect a
