Excruciating Pain: A Personal Fight With the Puzzling Pain of Cluster Headaches

It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. Then came quick shocks, like lightning bolts. As each class came and went, the pain eased and then returned with increased intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort around a single eye that persists up to several hours.

About one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient medical records suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms 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 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent attacks are managed with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a