Excruciating Agony: My Fight With the Puzzling Pain of Cluster Headache Syndrome

It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. It was followed by rapid shocks, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind a single eye that persists for several hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description 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 fixed hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, 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, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief cycles with infrequent attacks are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a