Excruciating Suffering: My Battle With the Enigmatic Suffering of Cluster Headache Syndrome

It began on a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class came and went, the pain subsided and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around one eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic attacks took its effect. 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 most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient medical records propose bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short bouts with infrequent episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a