Unbearable Suffering: My Battle With the Enigmatic Pain of Cluster Headaches
It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. Then came quick jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The headaches appeared repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often start with intense pain around one eye that persists up to several hours.
About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically begin with abrupt, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical texts suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
Cluster headaches were only officially classified by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in diagnosing the condition note this.
In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack passed.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.
But consultant specialists believe 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 critical: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.
The national guidelines need updating to reflect a
