Excruciating Agony: My Struggle With the Mysterious Pain of Cluster Headaches
It began on a gloomy Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my right eye. It was followed by rapid jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.
The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense pain behind one eye that lasts up to several hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, excruciating pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of long symptom-free periods.
What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the failure to plan life 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 cared for by her children during the paralysis 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 winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.
Ancient medical records suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.
Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in treating the condition explain this.
In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack eased.
Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But consultant specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief cycles with occasional attacks are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. 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 national guidance need updating to reflect a
