Unbearable Suffering: A Personal Struggle Against the Enigmatic Pain of Cluster Headache Syndrome
It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. Then came rapid shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.
This condition typically start with intense pain around a single eye that lasts for several hours.
About one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.
What unites patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her family often interpreted her episodes as intoxicated 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 office work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Still, the failure to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms 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 facility.
Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.
Ancient medical texts suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.
It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
The disorder were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder note this.
In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, 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.
Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.
Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.
National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are handled with acute treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.
The national guidance need updating to reflect a
