Excruciating Suffering: My Fight Against the Puzzling Suffering of Cluster Headache Syndrome
It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain erupted behind my one eye. This was followed by quick stabs, like electric shocks. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.
The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense pain behind one eye that persists for three hours.
About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, severe agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.
What unites patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol 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 eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.
Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. 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 paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.
Historical healing texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.
The disorder were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading specialists in treating the disorder explain this.
In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.
National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some people.
But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.
The official guidelines need updating to reflect a
