Full-Blown Agony: A Personal Battle With the Mysterious Suffering of Cluster Headaches

It was a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain around a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Attacks typically begin with sudden, severe pain around one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the inability to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient healing records propose bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the condition explain this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with occasional attacks are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a