Excruciating Suffering: My Battle Against the Mysterious Pain of Cluster Headache Syndrome
It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. Then came quick stabs, similar to lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.
The headaches returned frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe pain behind a single eye that lasts for several hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.
What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to plan 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 children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.
Ancient healing records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only formally classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the disorder note this.
In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, 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 advances, identification remains slow. Jamie Charteris's attacks 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 looked up his symptoms.
Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.
Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.
But consultant specialists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive therapy only. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. 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 reduces nerve activity.
The national guidance need revising to reflect a
