Full-Blown Agony: My Battle With the Enigmatic Pain of Cluster Headaches
It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. Then came quick stabs, like lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks returned repeatedly that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with severe pain around a single eye that lasts up to three hours.
Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.
What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, 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 value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.
Ancient healing records propose unusual remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in treating the condition explain this.
In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.
Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.
But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. 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 activity.
The official guidance need revising to reflect a
