Excruciating Suffering: My Struggle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. It was followed by quick jolts, similar to lightning bolts. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.
The headaches returned frequently that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with severe discomfort behind one eye that lasts for several hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically begin with sudden, severe pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.
One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her family often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.
Still, the failure to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family 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 recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.
Historical medical texts suggest bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in diagnosing the condition note this.
In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack passed.
National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.
But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with abortive therapy only. Longer or more intense 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 procedure into the area of the head where the discomfort is that decreases nerve signals.
The official guidelines need updating to reflect a
