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

It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort behind one eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with sudden, severe pain around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started 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 deteriorated through her youth. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to plan life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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

Ancient healing records suggest unusual remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the disorder note 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, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition 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 extracted because dental professionals misinterpreted her symptoms. She thinks 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 helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a