Unbearable Agony: My Fight With the Mysterious Suffering of Cluster Headache Syndrome

It began on a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that persists for several hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually start with sudden, severe pain around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport 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 found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around unpredictable attacks took its toll. She particularly 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 worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records propose unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers released the results of a study 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 circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a