🔗 Share this article

It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid stabs, like lightning bolts. As each class came and went, the pain eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain around a single eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published 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 progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 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 twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are managed with acute treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a