Excruciating Agony: A Personal Struggle Against the Enigmatic Pain of Cluster Headaches

It began on a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As each class came and went, the pain subsided and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain behind one eye that lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable 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 looked after by her children during the incapacitation caused by the worst 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 significant concert, only to have an episode inside a facility.

Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient medical texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

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

The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen treatment and medication until the episode eased.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a