Excruciating Suffering: My Struggle With the Mysterious Pain of Cluster Headaches
It was a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. Then came rapid shocks, like electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.
The headaches returned repeatedly that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe pain behind a single eye that persists up to several hours.
Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.
What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.
Still, the failure to organize life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his victims' heads.
Historical healing records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a European physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent specialists in treating the disorder explain this.
In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm advisor talked me through oxygen therapy and drugs until the attack passed.
Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.
But consultant specialists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief bouts with occasional attacks are managed with abortive therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.
The national guidance need revising to reflect a
