Full-Blown Agony: My Fight With the Puzzling Suffering of Cluster Headaches
It began on a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my right eye. This was followed by rapid shocks, like lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.
The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
This condition often begin with intense pain around one eye that lasts up to several hours.
About one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.
What connects patients is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Still, the failure to organize daily activities around erratic pain took its toll. 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 incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.
Historical medical records suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in diagnosing the disorder note this.
In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode passed.
National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.
But leading specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
