Unbearable Agony: A Personal Battle With the Enigmatic Pain of Cluster Headaches

It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around a single eye that lasts for three hours.

About 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually begin with sudden, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple 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 continuous attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding 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 hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing records propose bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Leading experts in treating the condition note this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode passed.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Brief bouts with occasional episodes are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a