Excruciating Agony: My Struggle With the Puzzling Pain of Cluster Headaches
It was a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. Then came quick stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.
The headaches returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically start with intense pain behind one eye that persists for several hours.
Approximately one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain around a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of long pain-free periods.
What unites patients is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.
One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.
Still, the failure to plan life around unpredictable attacks took its toll. 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 paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an evil spirit who attacked his victims' heads.
Historical healing records suggest unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.
In 1998, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs occur? For how much time? 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 sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.
Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of some individuals.
But consultant specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The official guidelines need updating to reflect a
