Full-Blown Pain: My Fight Against the Puzzling Pain of Cluster Headache Syndrome
It began on a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. It was followed by quick shocks, like lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches returned repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October 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-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with intense discomfort around a single eye that persists for three hours.
About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the lack of long pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.
One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Ancient healing records propose bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious remedies.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, 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 mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the condition explain this.
In the late 1990s, researchers published the results of a study for which they had triggered 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 in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.
National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known individuals.
But consultant specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
