🔗 Share this article

It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the inability to plan life around erratic attacks took its effect. She particularly hated being unable to plan social events, 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 obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical medical texts propose bizarre remedies for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks 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 discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with occasional episodes are managed with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. 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 decreases nerve activity.

The official guidelines need revising to reflect a