Unbearable Suffering: My Struggle Against the Puzzling Suffering of Cluster Headaches

It began on a dreary weekday 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 sprang behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain behind a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began 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 deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records suggest unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a