🔗 Share this article

It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. This was followed by rapid jolts, like electric shocks. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain around one eye that persists up to several hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Attacks typically start with abrupt, severe agony focused on a single 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 associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Ancient medical records propose unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting 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 intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough 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 redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with occasional episodes are handled with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a