A recent study published ineClinicalMedicine suggests that an increase in nightmares and hallucinations may serve as early warning signs for autoimmune diseases, such as lupus. Researchers argue that recognizing these mental health and neurological symptoms can help predict when a patient’s disease is about to worsen, allowing for earlier intervention and potentially improving patient care.
Lupus, or systemic lupus erythematosus, is a chronic autoimmune disease where the body’s immune system mistakenly attacks its own tissues. This condition can affect various parts of the body, including the skin, joints, kidneys, heart, lungs, blood cells, and brain. The symptoms of lupus are diverse and often include fatigue, joint pain, skin rashes, and organ inflammation.
What makes lupus particularly challenging to diagnose and manage is its unpredictable nature, where periods of illness (flares) alternate with periods of remission. The disease can vary greatly from person to person, in both severity and the organs involved.
One of the lesser-known but significant aspects of lupus is its impact on the brain, leading to neuropsychiatric symptoms such as mood swings, cognitive dysfunction, seizures, and psychosis. These symptoms can complicate the diagnosis and treatment of lupus, as they are often mistaken for primary psychiatric disorders rather than manifestations of the autoimmune disease.
The motivation for this study arose from the need to better understand and address the neuropsychiatric symptoms associated with lupus. Researchers observed that many patients with lupus reported experiencing vivid and distressing nightmares and hallucinations, which often went unreported or were misattributed to psychiatric conditions. These symptoms can be deeply distressing for patients and, if not properly understood, can lead to inappropriate treatments and delayed interventions for the underlying autoimmune condition.
The study aimed to explore whether these mental health symptoms could serve as early warning signs of disease flares in lupus patients. By systematically investigating the prevalence, timing, and progression of symptoms like nightmares and hallucinations, the researchers hoped to uncover patterns that could aid in predicting and managing disease activity.
The researchers conducted their new study using a mixed-methods approach, combining quantitative surveys and qualitative interviews to gather comprehensive data on the mental health and neurological symptoms experienced by individuals with autoimmune diseases. They surveyed 676 people living with lupus and 400 clinicians to obtain a broad understanding of the prevalence and timing of 29 different symptoms, including depression, hallucinations, and loss of balance.
In addition to the surveys, the researchers conducted detailed interviews with 69 patients suffering from systemic autoimmune rheumatic diseases (which include lupus) and 50 clinicians. These interviews were semi-structured, allowing participants to share their experiences and perspectives in depth.
One of the most significant findings was the prevalence of disrupted dream sleep among lupus patients. Approximately three in five patients reported experiencing vivid and distressing nightmares.
One-third of these patients indicated that these disrupted dreams occurred more than a year before the onset of other lupus symptoms. This suggests that nightmares could serve as an early warning sign, signaling the imminent onset of the disease long before more recognizable physical symptoms appear.
Hallucinations were another common symptom reported by lupus patients, with just under one in four experiencing them. Interestingly, 85% of these patients experienced hallucinations around the time of disease onset or later.
The study revealed a pattern where three in five lupus patients and one in three patients with other rheumatology-related conditions reported an increase in disrupted dreaming sleep, often characterized by vivid and distressing nightmares, just before they started experiencing hallucinations. These findings suggest a progression from nightmares to hallucinations, indicating that these symptoms may be part of a broader spectrum of neurological manifestations associated with autoimmune disease flares.
“For many years, I have discussed nightmares with my lupus patients and thought that there was a link with their disease activity,” explained senior study author David D’Cruz from King’s College London. “This research provides evidence of this, and we are strongly encouraging more doctors to ask about nightmares and other neuropsychiatric symptoms – thought to be unusual, but actually very common in systemic autoimmunity – to help us detect disease flares earlier.”
The qualitative data gathered through patient interviews provided further depth to these findings. Patients described their nightmares as being extremely vivid and distressing, often involving themes of being attacked, trapped, crushed, or falling. For example, one patient from Ireland described their nightmares as “horrific, like murders, like skin coming off people.”
These vivid descriptions underline the severe psychological impact of such symptoms and their potential link to disease activity. Additionally, the use of the term “daymares” to describe hallucinations helped patients understand and articulate their experiences more clearly, leading to what many described as “lightbulb” moments.
The study also highlighted a gap in current clinical practice. Many clinicians had not previously considered nightmares and hallucinations as related to disease flares. However, after being presented with the study’s findings, most clinicians agreed that recognizing these symptoms could serve as an early warning system, enabling them to intervene sooner and potentially prevent severe flares. The researchers emphasized the importance of clinicians discussing these symptoms with their patients and documenting each patient’s individual progression of symptoms to improve care.
“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 Melanie Sloan from the Department of Public Health and Primary Care at 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’s findings suggest that nightmares and hallucinations could be significant indicators of disease activity. But there are some limitations to note. The data relied heavily on patient self-reporting, which can be subject to recall bias. Additionally, the study did not verify diagnoses, and the sample may not be fully representative of the broader patient population. Further research is needed to quantitatively test the theory that neurological and psychiatric symptoms can serve as early indicators of autoimmune disease flares.
Future studies should also explore the potential mechanisms underlying the association between disrupted dreaming sleep, nightmares, and autoimmune disease activity. This could involve examining changes in brain activity and immune function during disease progression.
Guy Leschziner, a study author and neurologist at Guys’ and St Thomas’ hospital, and author of The Secret World of Sleep, said: “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. 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.
The study, “Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study00213-X/fulltext),” was authored by Melanie Sloan, James A. Bourgeois, Guy Leschziner, Thomas A. Pollak, Mervi Pitkanen, Rupert Harwood, Michael Bosley, Alessandra Bortoluzzi, Laura Andreoli, Wendy Diment, James Brimicombe, Mandeep Ubhi, Colette Barrere, Felix Naughton, Caroline Gordon, and David D’Cruz.
