Full-Blown Agony: My Fight Against the Puzzling Suffering of Cluster Headaches

It was a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my one eye. It was followed by quick shocks, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony around one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

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

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day 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 thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent experts in treating the condition note this.

In 1998, researchers released the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a