Full-Blown Suffering: A Personal Battle Against the Puzzling Suffering of Cluster Headaches

It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. Then came rapid jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort behind one eye that persists for several hours.

About one in 1,000 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 continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs 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 attack inside a portable toilet.

Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Historical healing records propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Brief bouts with occasional episodes are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a