Full-Blown Pain: A Personal Fight Against the Mysterious Suffering of Cluster Headache Syndrome

It was a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation sprang behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort around a single eye that persists up to three hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Attacks usually begin with abrupt, excruciating pain 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 associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical healing texts suggest unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known people.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional attacks are managed with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a