Unbearable Suffering: A Personal Fight With the Enigmatic Pain of Cluster Headaches

It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon forming 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 pain in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind one eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Attacks usually start with sudden, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional 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 the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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

Historical medical texts suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted 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 support line during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are managed with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a