Full-Blown Suffering: My Battle With the Puzzling Suffering of Cluster Headache Syndrome
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 class, when a sudden sensation bloomed behind my right eye. It was followed by rapid stabs, like lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The headaches returned repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with severe discomfort around a single eye that persists for several hours.
About 1 in 1000 people are affected by the condition, and men are more often affected. Attacks usually begin with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.
What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. 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 found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.
Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, 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 robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his sufferers' heads.
Historical medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.
Cluster headaches were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in diagnosing the condition explain this.
In 1998, researchers published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.
Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack eased.
National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known people.
But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a
