Unbearable Agony: My Battle With the Puzzling Suffering of Cluster Headache Syndrome
It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.
The headaches appeared frequently that fall, and again in the spring, soon forming an yearly cycle. The autumn months 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 the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition typically start with intense pain behind a single eye that lasts up to three hours.
Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically start with sudden, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.
What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.
One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate 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 documented throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.
Ancient medical records propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
Cluster headaches were only officially classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Leading specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the findings of a study for which they had induced 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 reduction when they recovered.
Despite such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack passed.
National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.
But leading specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional attacks are managed with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.
The national guidance need updating to reflect a
