Excruciating Suffering: My Fight Against the Enigmatic Pain of Cluster Headaches

It began on a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. This was followed by quick jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain around one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, severe agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been documented 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 disease to an evil entity who afflicted his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting 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 specific hours”.

The disorder were only formally classified by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.

But leading neurologists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a