Unbearable Suffering: My Fight Against the Puzzling Pain of Cluster Headache Syndrome
It was a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came quick shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.
The headaches returned repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with severe discomfort behind one eye that persists for three hours.
About one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically start with sudden, severe agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have chronic attacks, defined by the lack of extended symptom-free periods.
What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.
Historical medical texts suggest unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.
Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in treating the condition explain this.
In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, 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 recovered.
Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.
Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some individuals.
But leading specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are handled with abortive therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.
The official guidelines need revising to reflect a
