Unbearable Suffering: My Fight With the Enigmatic Pain of Cluster Headache Syndrome

It was a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my one eye. This was followed by quick stabs, like electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking 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 family often mistook her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional 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 episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing texts propose unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a