Excruciating Suffering: My Struggle With the Enigmatic Suffering of Cluster Headaches
It was a dreary Monday 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 rapid jolts, similar to electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.
The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense discomfort around one eye that persists for three hours.
About one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, severe pain around one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.
What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.
One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After having sherry 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 husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office 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 the early 2000s at a national neurology center.
Still, the inability to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Ancient medical texts propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only formally classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.
In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the a brain region, 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 blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a doctor researched his complaints.
Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession 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 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.
Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.
But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are handled with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve signals.
The official guidelines need updating to reflect a