Excruciating Agony: My Struggle Against the Enigmatic Pain of Cluster Headaches

It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. It was followed by quick shocks, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort behind one eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and males are more often affected. Attacks usually begin with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. 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 relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable 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 appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts propose unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially classified by global 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 blood vessel that supplies blood to the brain. Leading specialists in treating the condition explain this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side 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 nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a