Unbearable Pain: My Battle With the Mysterious Suffering of Cluster Headaches
It was a overcast 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 one eye. This was followed by quick shocks, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe discomfort around one eye that persists for three hours.
Approximately 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically begin with sudden, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks 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 symptoms deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.
Still, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst 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 major concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.
Historical medical texts suggest unusual treatments for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Prominent experts in treating the condition note this.
In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult 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 misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.
National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.
But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with occasional attacks are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
