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

It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind one eye that persists up to several hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to plan daily activities around erratic pain took its effect. 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 children during the incapacitation 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 recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known people.

But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a