Full-Blown Suffering: My Fight With the Enigmatic Pain of Cluster Headaches
It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain erupted behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.
The headaches appeared frequently that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically start with intense pain behind one eye that persists for three hours.
About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, severe pain around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.
Historical medical texts suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more folk cures.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.
The disorder were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in treating the disorder note this.
In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity 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.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority 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 dental professionals misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.
Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But consultant specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief cycles with occasional episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.
The national guidance need revising to reflect a
