🔗 Share this article

It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain around a single eye that persists for three hours.

About 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks started 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 symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, 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 small freedoms 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 portable toilet.

---

Headaches have been documented across history. “The first description 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 evil entity who attacked his victims' heads.

Historical healing records propose bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm 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.

A charity trustee, 78, has suffered from cluster headaches 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 extracted because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked them through oxygen treatment and medication until the attack eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with acute therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a