Excruciating Pain: A Personal Struggle With the Enigmatic Pain of Cluster Headache Syndrome
It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain sprang behind my right eye. Then came rapid jolts, like electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The attacks returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense discomfort around one eye that persists for several hours.
About one in 1,000 people are affected by the condition, and men are more often affected. Attacks typically start 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 tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.
What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures 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.
One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often mistook her episodes as drunken behavior. Understanding eventually 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 concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical records propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only officially recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.
In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.
National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.
The national guidance need updating to reflect a
