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

It was a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my one eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain around a single eye that lasts for three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small 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 facility.

Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose unusual remedies for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most 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 dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief bouts with occasional attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a