Unbearable Pain: A Personal Battle Against the Puzzling Pain of Cluster Headache Syndrome
It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation erupted behind my right eye. It was followed by rapid jolts, like lightning bolts. As the school day progressed, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.
The headaches appeared repeatedly that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often start with intense pain around one eye that persists for several hours.
About 1 in 1000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, severe pain around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.
What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.
One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her attacks as drunken episodes. Support finally came from her father and then from her husband, 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 fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.
Historical medical texts propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.
Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Leading specialists in treating the condition note this.
In 1998, scientists released 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 prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack passed.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.
But consultant specialists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short bouts with infrequent episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. 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 reduces nerve activity.
The national guidelines need revising to reflect a
