Unbearable Suffering: A Personal Fight Against the Mysterious Pain of Cluster Headaches

It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. This was followed by quick shocks, like lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing records suggest unusual treatments for what some experts would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, 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 reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief cycles with infrequent attacks are managed with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a