Excruciating Pain: A Personal Fight With the Mysterious Pain of Cluster Headache Syndrome

It began on a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. It was followed by rapid jolts, like electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort behind one eye that persists up to three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks usually start with sudden, excruciating agony around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize life around erratic pain took its effect. She particularly disliked 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 incapacitation caused by the most severe episodes. “It steals from you of the simple liberties 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 facility.

Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments including bloodletting to other, more folk cures.

It was a European physician 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 each day at specific hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent specialists in treating the condition note this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches 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 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 responded. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with occasional attacks are managed with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a