Unbearable Agony: A Personal Struggle With the Enigmatic Suffering of Cluster Headaches

It began on a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. Then came quick shocks, similar to electric shocks. As the school day came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain behind a single eye that lasts up to several hours.

About one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding finally 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 relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe 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 documented throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

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

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading experts in treating the condition explain this.

In 1998, researchers published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed activation 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, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack passed.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known people.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with abortive treatment alone. Longer or more intense bouts require preventives such as certain drugs, 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 discomfort is that reduces nerve signals.

The official guidance need revising to reflect a