Full-Blown Pain: My Struggle With the Puzzling Suffering of Cluster Headache Syndrome
It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. This was followed by rapid shocks, similar to electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.
The attacks returned frequently that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with intense discomfort around a single eye that persists up to three hours.
About one in 1,000 people are affected by the condition, and males are more often affected. Attacks typically start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly disliked 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 incapacitation caused by the worst episodes. “It robs you of the small 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 portable toilet.
Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.
Ancient healing records suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in treating the disorder explain this.
In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority 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 pulled because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack eased.
National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some individuals.
But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates 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 paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidelines need updating to reflect a
