🔗 Share this article

It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my one eye. Then came rapid shocks, like electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort around one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly 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 most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing records propose bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers released the results 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 prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short bouts with infrequent episodes are handled with acute treatment only. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a