Full-Blown Agony: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome

It began on a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October 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-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain behind one eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically start with sudden, severe pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; others have chronic attacks, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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

Ancient medical records propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.

But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with infrequent attacks are handled with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a