🔗 Share this article

It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation bloomed behind my one eye. Then came quick jolts, like electric shocks. As each class progressed, the pain subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around one eye that lasts up to several hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, 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 liberties 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 documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

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

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief cycles with occasional attacks are handled with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a