Excruciating Pain: My Struggle Against the Puzzling Pain of Cluster Headaches
It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation sprang behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.
The attacks returned frequently that fall, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with intense discomfort around a single eye that lasts up to several hours.
About one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.
What unites patients is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.
One patient, 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 worsened through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Still, the inability to organize life around unpredictable 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 looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.
Ancient healing texts propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent experts in treating the disorder note this.
In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician researched his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.
National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known people.
But leading specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are handled with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The official guidance need revising to reflect a
