Unbearable Agony: A Personal Struggle Against the Mysterious Suffering of Cluster Headaches

It was a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain bloomed behind my one eye. Then came quick stabs, 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 left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around one eye that persists for three hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Attacks usually start with sudden, severe agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her parent 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 hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the attacks 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 recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are managed with acute therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a