Excruciating Suffering: My Struggle With the Enigmatic Suffering of Cluster Headache Syndrome
It was a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. Then came quick stabs, like electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.
The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe pain around a single eye that persists up to three hours.
About 1 in 1000 people suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.
One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.
Still, the inability to organize life around unpredictable pain took its effect. She particularly hated 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 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 significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Historical medical texts propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.
The disorder were only officially recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the head. Prominent experts in diagnosing the disorder explain this.
In 1998, researchers released the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen treatment and medication until the episode passed.
Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.
But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short bouts with infrequent attacks are managed with acute treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.
The national guidelines need updating to reflect a