Full-Blown Suffering: A Personal Struggle Against the Puzzling Pain of Cluster Headache Syndrome

It began on a gloomy Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my right eye. This was followed by quick stabs, like lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain behind a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often 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, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing texts propose unusual treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk 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 happening and vanishing each day at specific hours”.

The disorder were only officially recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from 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 misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a