Full-Blown Pain: My Struggle With the Mysterious Pain of Cluster Headaches
It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. Then came rapid jolts, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The headaches appeared frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense pain around one eye that persists for three hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.
What connects patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.
Nevertheless, the failure to plan life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical records suggest unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
The disorder were only formally classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in treating the disorder note this.
In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches 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 teeth extracted because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode passed.
Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.
But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with occasional attacks are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
