Excruciating Pain: My Fight With the Mysterious Suffering of Cluster Headache Syndrome

It was a dreary weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After having 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 episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate 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 described across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a