Unbearable Suffering: My Struggle With the Mysterious Suffering of Cluster Headache Syndrome

It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then came back with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid 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 national hospital.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority 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 misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and medication until the episode passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are handled with acute therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a