Unbearable Agony: My Struggle With the Puzzling Suffering of Cluster Headache Syndrome
It began on a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation erupted behind my one eye. Then came quick shocks, like electric shocks. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.
The headaches appeared frequently that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe pain behind one eye that persists for three hours.
Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks usually begin with sudden, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.
What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache 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 two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “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 fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, 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 simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.
Historical medical texts suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition note this.
In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.
Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some people.
But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with occasional attacks are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired 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 activity.
The national guidelines need updating to reflect a
