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

It was a overcast weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe pain behind one eye that persists up to three hours.

About one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Ancient healing records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes 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 helpline during an attack in 2021; a calm volunteer talked them through oxygen treatment and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with occasional attacks are handled with abortive therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. 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 guidance need updating to reflect a