Excruciating Suffering: My Struggle With the Puzzling Suffering of Cluster Headaches
It began on a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. This was followed by rapid stabs, like electric shocks. As each class progressed, the pain eased and then returned with increased force. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically start with severe discomfort around one eye that lasts for several hours.
About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony around a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national hospital.
Still, the inability to plan life around unpredictable pain took its effect. 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 children during the incapacitation 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 obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Ancient healing texts suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.
The disorder were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.
In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.
Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the attack passed.
National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.
But leading specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short cycles with occasional attacks are handled with acute therapy only. More prolonged or more intense periods 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 skull where the pain is that reduces nerve activity.
The national guidelines need updating to reflect a
