Unbearable Suffering: My Fight With the Puzzling Suffering of Cluster Headaches

It began on a dreary weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain bloomed behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that lasts for three hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground 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 more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified 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 artery which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the episode passed.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a