Unbearable Pain: My Battle Against the Mysterious Suffering of Cluster Headaches
It began on a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain erupted behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The headaches appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe pain around one eye that lasts for several hours.
Approximately one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches usually start with sudden, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.
One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Still, the inability to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children 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 recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.
Ancient medical texts propose unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.
Cluster headaches were only officially classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Leading experts in treating the disorder note this.
In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a physician researched his complaints.
Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, 78, 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 twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.
National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.
But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.
The national guidance need revising to reflect a
