Unbearable Agony: My Battle Against the Mysterious Pain of Cluster Headaches
It was a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with intense pain behind one eye that lasts up to three hours.
Approximately 1 in 1000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.
What unites patients is the severity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.
Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked 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 worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.
Ancient medical records propose bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.
The disorder were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.
In 1998, researchers released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a physician researched his complaints.
Neurologists say delays in diagnosis and managing happen 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 head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for the majority of her 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 pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.
National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.
But consultant specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are managed with acute therapy only. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.
The national guidance need revising to reflect a
