Excruciating Suffering: My Struggle With the Puzzling Suffering of Cluster Headaches

It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my right eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort behind a single eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually start with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started 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 worsened through childhood. Alcohol in her adolescence, like several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally 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 clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable 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 small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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

Historical medical texts propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some people.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a