Excruciating Suffering: My Struggle With the Mysterious Pain of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. This was followed by quick jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.
The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with severe pain around one eye that persists up to three hours.
About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.
What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.
One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her family often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.
Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small 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 documented across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing texts suggest unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.
The disorder were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from cluster headaches 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 dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.
Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known individuals.
But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The national guidelines need revising to reflect a
