Unbearable Suffering: My Fight Against the Mysterious Pain of Cluster Headache Syndrome

It began on a overcast Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation sprang behind my right eye. Then came rapid stabs, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort around a single eye that persists up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often affected. Attacks usually begin with sudden, severe pain around a single eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms 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 portable toilet.

Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing texts suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially 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 major artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a