Full-Blown Suffering: My Struggle With the Enigmatic Pain of Cluster Headache Syndrome

It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my right eye. It was followed by rapid jolts, like lightning bolts. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain around one eye that lasts for several hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony focused on one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around erratic attacks took its toll. She especially disliked 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 steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records propose unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of 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 has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant specialists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a