Unbearable Suffering: A Personal Battle With the Mysterious Pain of Cluster Headaches

It began on a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. This was followed by rapid shocks, similar to electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that persists up to several hours.

About one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority 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 dentists misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with occasional attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a