🔗 Share this article

It began on a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort behind a single eye that persists up to three hours.

About 1 in 1000 people suffer by the condition, and men are more often affected. Attacks usually start with sudden, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes 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 symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs 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 attack inside a facility.

---

Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing texts suggest bizarre remedies for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen treatment and medication until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a