Unbearable Pain: My Struggle Against the Puzzling Suffering of Cluster Headaches
It began on a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. Then came rapid jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.
The attacks appeared repeatedly that fall, and once more in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with severe discomfort behind a single eye that persists up to several hours.
About one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe agony 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 several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.
What connects patients is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally 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 concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to plan daily activities around unpredictable pain 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 family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Historical medical records propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Leading experts in treating the condition explain this.
In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack eased.
National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with occasional episodes are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.
The national guidelines need revising to reflect a
