Unbearable Agony: A Personal Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. Then came rapid jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that fall, and once more in spring, soon establishing an annual pattern. 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-blown agony in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically start with intense pain behind a single eye that persists for three hours.
About 1 in 1000 individuals suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, severe agony around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.
What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.
Still, the inability to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining 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 antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.
Historical healing texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Leading specialists in diagnosing the condition explain this.
In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.
Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.
National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Short bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.
The official guidance need revising to reflect a
