Unbearable Pain: My Struggle Against the Mysterious Pain of Cluster Headaches
It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by quick jolts, similar to electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The headaches returned frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with severe pain behind one eye that lasts up to three hours.
About 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.
What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.
One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms 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 described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.
Ancient medical texts propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
Cluster headaches were only formally recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent experts in treating the condition note this.
In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode passed.
National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.
But consultant specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief bouts with occasional attacks are managed with acute therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.
The official guidelines need revising to reflect a
