🔗 Share this article

It began on a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. This was followed by quick shocks, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain 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 robs 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 portable toilet.

---

Headaches have been described across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing texts propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in treating the disorder note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are managed with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a