Excruciating Agony: My Fight With the Puzzling Pain of Cluster Headaches
It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. Then came quick shocks, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.
The attacks appeared frequently that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often begin with severe discomfort around a single eye that persists up to several hours.
Approximately one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have chronic attacks, defined by the absence of long pain-free periods.
What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as intoxicated behavior. Understanding eventually 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 episodes. Her breakthrough diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Historical healing records suggest unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.
The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in treating the disorder note this.
In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode passed.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.
But leading specialists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional attacks are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
