Excruciating Agony: A Personal Struggle Against the Mysterious Suffering of Cluster Headaches

It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my one eye. This was followed by quick shocks, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around one eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, severe pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly 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 paralysis caused by the worst episodes. “It robs you of the small liberties 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 across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical records propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, 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 delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one 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 signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack eased.

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

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a