For those living with autoimmune diseases like lupus, a sudden onslaught of vivid nightmares and unsettling hallucinations might not be just a trick of the mind, but a harbinger of an approaching storm. These mental health and neurological symptoms, argue researchers from the University of Cambridge and King’s College London, could serve as an early warning system, alerting patients and their physicians to an impending disease flare.
The findings, published today in eClinicalMedicine, emerge from a comprehensive survey of 676 lupus patients and 400 clinicians, coupled with in-depth interviews of 69 individuals with systemic autoimmune rheumatic diseases and 50 medical professionals. Lupus, a notorious autoimmune inflammatory condition, is known for its far-reaching effects on the body, including the brain.
The Nightmare Before the Flare
Among the 29 neurological and mental health symptoms the researchers inquired about, disrupted dream sleep emerged as a common thread, reported by three out of five patients. Notably, a third of these individuals experienced this symptom over a year before the onset of their lupus disease.
Hallucinations, while less prevalent, still affected nearly one in four patients. However, the timing of this symptom was more closely tied to disease onset, with 85% of patients reporting its appearance around or after the initial manifestation of lupus.
Delving deeper through patient interviews, the researchers uncovered a striking pattern: three in five lupus patients and one in three with other rheumatology-related conditions experienced increasingly disturbed dreaming – often in the form of vivid, distressing nightmares – just before the onset of hallucinations. These nightmares, patients recounted, were often harrowing, involving themes of attack, entrapment, crushing, or falling.
Shedding Light on ‘Daymares’
During these interviews, the researchers found that using the term ‘daymares’ to describe hallucinations often led to a moment of clarity for patients. They felt it was a less intimidating and stigmatized word compared to hallucinations.
“[When] you said that word daymare and as soon as you said that it just made sense, it’s like not necessarily scary, it’s just like you’ve had a dream and yet you’re sitting awake in the garden,” described a patient from England. “I see different things, it’s like I come out of it and it’s like when you wake up and you can’t remember your dream and you’re there but you’re not there… it’s like feeling really disorientated, the nearest thing I can think of is that I feel like I’m Alice in Wonderland.”
Despite the prevalence of these experiences, patients were hesitant to share them, and many specialists admitted they had never considered the link between nightmares, hallucinations, and disease flares. Most agreed that recognizing these early flare symptoms could provide an ‘early warning system,’ enabling improved care and potentially even reducing clinic times by catching flares at an earlier stage.
“It’s important that clinicians talk to their patients about these types of symptoms and spend time writing down each patient’s individual progression of symptoms,” said lead author Dr Melanie Sloan from the University of Cambridge. “Patients often know which symptoms are a bad sign that their disease is about to flare, but both patients and doctors can be reluctant to discuss mental health and neurological symptoms, particularly if they don’t realise that these can be a part of autoimmune diseases.”
The study also highlighted instances where these symptoms led to misdiagnosis or even hospitalization for psychotic episodes or suicidal ideation, only to later be identified as the first signs of an autoimmune disease.
“We have long been aware that alterations in dreaming may signify changes in physical, neurological and mental health, and can sometimes be early indicators of disease,” said study author and neurologist Professor Guy Leschziner. “However, this is the first evidence that nightmares may also help us monitor such a serious autoimmune condition like lupus, and is an important prompt to patients and clinicians alike that sleep symptoms may tell us about impending relapse.”
As the understanding of the complex interplay between autoimmune diseases and neuropsychiatric symptoms grows, this study underscores the importance of open dialogue between patients and their healthcare providers. By tuning into the whispers of the mind, both in sleep and waking life, we may gain a valuable tool in predicting and managing the tempestuous course of these conditions.
Sloan, M. et al. Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study. eClinicalMedicine; 21 May 2024; DOI: 10.1016/j.eclinm.2024.102634
