Unbearable Suffering: My Battle Against the Mysterious Suffering of Cluster Headaches
It was a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain sprang behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe discomfort around a single eye that persists for several hours.
About one in 1,000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with sudden, severe agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.
What unites sufferers is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.
Val Hobbs, 74, 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 put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to organize life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.
Ancient healing texts propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.
Cluster headaches were only formally classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the condition note this.
In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent 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 deactivation when they felt better.
In spite of such progress, identification remains slow. One man'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 multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.
Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, 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 suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.
Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some people.
But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent attacks are handled with abortive treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a