Unbearable Agony: A Personal Struggle With the Enigmatic Suffering of Cluster Headaches

It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague 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 returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that reaches its peak 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, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of long pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support finally 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 illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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

Ancient healing records propose unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks 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 pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority 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 dental professionals misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the episode passed.

National guidance on management advise that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a