Excruciating Agony: My Struggle With the Puzzling Pain of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.
The headaches appeared frequently that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense pain behind a single eye that persists for several hours.
About one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, severe pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of extended symptom-free periods.
What connects sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.
One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, 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, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs 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 throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Ancient medical records suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European doctor 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 disappearing daily at specific hours”.
The disorder were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the condition explain this.
In 1998, researchers released the findings of a study for which they had induced cluster headaches 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 responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a physician looked up his complaints.
Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some people.
But consultant specialists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
