Excruciating Suffering: My Battle Against the Mysterious Suffering of Cluster Headaches
It was a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation sprang behind my one eye. This was followed by rapid jolts, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically begin with severe pain around a single eye that lasts for several hours.
About 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of long symptom-free periods.
What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.
One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Still, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky 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 small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.
Historical medical records suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
The disorder were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in diagnosing the disorder note this.
In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.
National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered 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 individuals.
But consultant neurologists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.
The official guidance need revising to reflect a
