Excruciating Agony: My Struggle With the Mysterious Pain of Cluster Headache Syndrome

It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by rapid stabs, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort around one eye that persists up to several hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, 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 freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with acute therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a