Unbearable Pain: A Personal Struggle Against the Puzzling Suffering of Cluster Headaches

It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind a single eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically start with abrupt, severe agony focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Support finally came from her father 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, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She particularly 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 robs you of the small liberties 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 facility.

Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a