Full-Blown Pain: A Personal Fight With the Mysterious Suffering of Cluster Headache Syndrome

It began on a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. This was followed by quick jolts, like lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that lasts for several hours.

About one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing records suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily 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 believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the condition note this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with abortive treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a