Unbearable Suffering: My Battle With the Puzzling Suffering of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. This was followed by rapid stabs, like lightning bolts. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.
The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe discomfort behind a single eye that persists for several hours.
About 1 in 1000 people suffer by the disorder, and men are more often affected. Cluster headaches usually begin with sudden, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.
Still, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.
Historical healing texts propose bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.
It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.
The disorder were only formally classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent specialists in diagnosing the condition note this.
In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a physician looked up his complaints.
Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.
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 recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.
Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.
But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve signals.
The national guidance need updating to reflect a
