Unbearable Pain: My Battle Against the Puzzling Pain of Cluster Headache Syndrome

It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation erupted behind my right eye. It was followed by quick stabs, like lightning bolts. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

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

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually start with sudden, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to organize life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical records suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion 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 unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known people.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a