Full-Blown Agony: My Battle Against the Mysterious Suffering of Cluster Headaches

It was a overcast weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. Then came rapid shocks, similar to electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in class 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 typically start with intense discomfort around a single eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks usually begin with abrupt, severe agony around a single 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 red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally classified by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and medication until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a