Unbearable Suffering: A Personal Struggle With the Mysterious Pain of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically begin with intense pain behind one eye that lasts for several hours.
About 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.
What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, 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 winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.
Ancient medical records propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.
The disorder were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.
In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient 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 certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.
Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.
But leading specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are managed with abortive therapy only. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The national guidance need updating to reflect a
