Full-Blown Suffering: My Fight With the Enigmatic Pain of Cluster Headache Syndrome

It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. It was followed by quick jolts, similar to electric shocks. As the school day progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

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

This condition often begin with intense discomfort around one eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the condition, and men are more often affected. Attacks typically begin with sudden, severe agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting 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 “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a