Full-Blown Pain: A Personal Struggle With the Mysterious Suffering of Cluster Headaches
It was a gloomy Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. It was followed by quick stabs, similar to lightning bolts. As the school day progressed, the discomfort eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks returned repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.
This condition typically begin with intense pain behind one eye that lasts for several hours.
About 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, severe pain around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What unites sufferers is the severity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.
Nevertheless, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.
Ancient healing records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.
The disorder were only formally recognised by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.
Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. 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 reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.
National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.
But leading neurologists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventives 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 discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
