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

It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to plan life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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

Historical healing records suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured 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 reduction when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a