🔗 Share this article

It was a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. This was followed by quick stabs, similar to electric shocks. As each class came and went, the discomfort eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain behind a single eye that lasts for three hours.

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a