Excruciating Suffering: A Personal Fight Against the Puzzling Pain of Cluster Headache Syndrome

It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. This was followed by quick shocks, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain around one eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes 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 condition deteriorated through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family 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 major concert, only to have an episode inside a facility.

Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional attacks are handled with abortive treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a