Unbearable Suffering: A Personal Battle Against the Puzzling Suffering of Cluster Headache Syndrome
It was a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. Then came quick shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.
The attacks returned frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often begin with intense pain behind one eye that persists up to three hours.
Approximately one in 1,000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually start with abrupt, excruciating agony around one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic attacks, characterized by the lack of extended symptom-free periods.
What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.
Still, the inability to plan daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across 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 sufferers' heads.
Ancient medical records propose bizarre remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.
It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.
Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent experts in treating the condition explain this.
In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.
Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the episode passed.
Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But leading neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with infrequent attacks are managed with acute therapy alone. Longer 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 discomfort is that decreases nerve activity.
The official guidance need updating to reflect a
