Excruciating Suffering: My Fight Against the Puzzling Suffering of Cluster Headache Syndrome

It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. It was followed by rapid shocks, similar to electric shocks. 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 staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain around one eye that persists for three hours.

About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually begin with sudden, excruciating agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; others have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing records propose bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified 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 description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified 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 low, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the attack eased.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are managed 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 nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a