Excruciating Pain: My Fight Against the Puzzling Pain of Cluster Headache Syndrome
It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.
The headaches returned frequently that autumn, and again in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with intense pain behind a single eye that persists up to several hours.
Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her family often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to organize daily activities 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 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 remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Historical medical records suggest unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk cures.
It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.
In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, 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 progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.
Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.
But leading neurologists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are managed with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
