Excruciating Pain: My Battle With the Puzzling Pain of Cluster Headache Syndrome

It was a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my one eye. Then came rapid jolts, like electric shocks. As each class progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around a single eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, excruciating agony around one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation 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 facility.

Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient healing records suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

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

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional attacks are managed with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a