🔗 Share this article

It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my right eye. It was followed by rapid stabs, like lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort behind one eye that persists for three hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often affected. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began 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 many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted 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 found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially 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 paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate 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 across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing texts propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are managed with abortive treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a