Unbearable Pain: My Struggle Against the Puzzling Pain of Cluster Headaches
It was a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation sprang behind my right eye. This was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.
The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often begin with severe discomfort behind one eye that persists up to three hours.
Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually start with abrupt, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Understanding 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 office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the inability to organize life 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 incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.
Ancient medical texts propose unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Leading experts in treating the disorder note this.
In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling 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 symptoms.
Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced 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 pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.
Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.
But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.
The national guidance need updating to reflect a
