Nightmares and Hallucinations Could Be an Early Sign of Autoimmune Disease

Nightmares and hallucinations could be early warning signs of the onset of autoimmune diseases such as lupus, according to a study published in the journal eClinicalMedicine.

Many of these neuropsychiatric symptoms – which one patient described as feeling like being in “Alice in Wonderland” – haven’t been explored before. The researchers argue that there needs to be greater recognition that mental health symptoms can act as early warning signs of autoimmune disease flares.

Nightmares signal impending flares of lupus

Lupus is an autoimmune disease that causes widespread inflammation and tissue damage in organs including the brain. Despite efforts to identify biomarkers diagnosing neuropsychiatric symptoms of lupus, accurate diagnosis remains challenging due to existing criteria not being reflective of patient experiences, contributing to widespread under-identification of neuropsychiatric symptoms.

Researchers at the University of Cambridge and King’s College London investigated the timings of the onset of neuropsychiatric symptoms in comparison to the timing of the onset of lupus. In doing so, the researchers set out to identify neuropsychological prodromes and the progression of symptoms in lupus that could facilitate earlier diagnosis of the disease and earlier treatment of recurrent flares.

676 people living with lupus and 400 clinicians were surveyed, and detailed interviews were conducted with 69 people living with systemic autoimmune rheumatic diseases (including lupus) and 50 clinicians.

The researchers asked patients about the timing of 29 neurological and mental health symptoms. In interviews, patients were asked if they could list the order in which symptoms usually occurred when their disease was flaring up.

One of the more common symptoms reported was disrupted dream sleep, experienced by three in five patients, a third of whom reported this symptom appearing over a year before the onset of lupus.

Among patients who experienced hallucinations, 54% reported this first appearing more than 1 year after disease onset. Patient interviews revealed that 61% of lupus patients and 34% with other rheumatology-related conditions reported disrupted dream sleep in the form of nightmares just before their hallucinations.

“Of particular importance was the discovery of multiple prodromal symptoms for both the onset of the disease and for later disease flare-ups,” Dr. Melanie Sloan lead author from the Department of Public Health and Primary Care at the University of Cambridge told Technology Networks. “This included symptoms that hadn't been explored before such as nightmares with many lupus patients experiencing increased nightmares just before they got hallucinations in their flares.”

Using the term “daymares” to describe hallucinations was found to be less stigmatizing for patients. One participant said: “[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…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.”

The authors detail how this highlights the importance of terminology in clinical practice and how it can affect patient’s willingness to share their symptoms. “We found that clinicians often write standard phrases (for example, ‘patient failed to tolerate (a medication)’ or ‘patient claims to be having (symptom))’ without realizing the impact on patients, and the judgmental connotations,” said Sloan.

Recognizing neuropsychiatric symptoms of disease

The researchers suggest that these types of symptoms could be a prodrome to other disease symptoms, some of which may be organ- or life-threatening. Despite this, the study highlights a reluctance among patients and doctors to discuss neuropsychiatric symptoms of disease flares.

“Many of these neuropsychiatric symptoms are invisible and not detectable using current tests (for example, hallucinations and anxiety) so if patients and clinicians don't talk about them as they often don't, then they remain unidentified and untreated,” said Sloan.

Reports that some patients have initially been misdiagnosed or even hospitalized with a psychotic episode only for symptoms to be recognized as the first sign of their autoimmune disease highlight the importance of acknowledging neuropsychiatric symptoms.

Most participating clinicians said they would talk to their patients about nightmares and hallucinations in the future, agreeing that recognizing these early flare symptoms may provide an ‘early warning system’ to potential disease flares.

“Our results suggest that there is often a similarity for the same patient in each of their disease flares. Knowing this for each patient could assist with earlier diagnosis of a flare and earlier treatment,” explained Sloan.

While these findings highlight that greater recognition of early neuropsychiatric symptoms could enable quicker disease flare identification and treatment, Sloan emphasized that “this research was very exploratory and had several limitations by the nature of these types of studies where we were asking patients to remember their symptoms.”

Discussing the next steps for this research, Sloan concluded: “The next stage is now to closely follow a group of patients over a year or more as they are experiencing their flare symptoms. This will be more accurate and more in depth so we will be able to ascertain if there are any symptoms that are similar within many people's disease flares and if each person has a very similar progression of symptoms in each of their flares.”

Dr. Melanie Sloan was speaking to Blake Forman, Senior Science Writer for Technology Networks.

About the interviewee:

Dr. Melanie Sloan works in the Department of Public Health and Primary Care at the University of Cambridge. Her research interests include improving relationships between clinicians and patients and designing and trialing interventions to improve the lives of patients with systemic autoimmune diseases.

Reference: Sloan M, Bourgeois JA, Leschziner G, 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. 2024. doi: 10.1016/j.eclinm.2024.102634