Patients feel like Alice in Wonderland and cannot distinguish dreams from reality
According to an international team of researchers from the University of Cambridge and King's College London, an increase in nightmares and hallucinations – or “waking nightmares” – may herald the onset of autoimmune diseases such as lupus.
British scientists say there needs to be greater recognition that these types of mental and neurological symptoms can serve an early warning sign that a person is approaching an “outbreak” when their illness worsens for a while.
The study surveyed 676 people living with lupus and also conducted in-depth interviews with 69 people with systemic autoimmune rheumatic diseases. Lupus is an autoimmune inflammatory disease known to affect multiple organs, including the brain.
In the study, researchers asked patients about the timing of 29 neurological and psychiatric symptoms (such as depression, hallucinations and loss of balance). During the interview, patients were also asked if they could list symptoms in the order in which they typically occurred when their illness worsened.
One of the most common symptoms reported was sleep disturbance with dreams, experienced by three in five patients, a third of whom reported that the symptom began more than a year before the onset of lupus.
Just under one in four patients complained of hallucinations, although 85 percent of them did not experience the symptom until or after the onset of the disease. However, when the researchers surveyed patients, they found that three in five patients with lupus and one in three with other rheumatology-related diseases reported increasingly more frequent sleep disturbances with dreams—usually vivid and distressing nightmares—immediately before hallucinations. The nightmares were about being attacked, trapped, crashing, or falling.
One patient from Ireland described her nightmares as “horrible, like murder, like people being flayed off, terrible… I think it's like when I'm depressed, which could be a consequence of lupus, so the more stress I'm under my body, the more vivid and unpleasant the dreams will be.”
The study's interviewers found that using the term “nightmares” to describe hallucinations often resulted in patients having a “eureka moment” and they felt it was a less scary and stigmatizing word.
A patient from England said: “I see things, I seem to come to my senses, 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 completely disorientated. , and the closest I can come up with is that I feel like Alice in Wonderland.”
Patients experiencing hallucinations were reluctant to share their experiences, and many experts said they had never thought nightmares and hallucinations associated with exacerbations of the disease.
Lead study author Dr. Melanie Sloan explains that patients often know which symptoms are a bad sign that their illness is about to get worse, but both patients and doctors may be reluctant to discuss mental and neurological symptoms, especially if they do not understand that they are may be part of autoimmune diseases.
The importance of recognizing these symptoms has been highlighted by reports that some patients were initially misdiagnosed or were even hospitalized with a psychotic episode or suicidal thoughts, which were only later recognized as the first sign their autoimmune disease.
Neurologist Guy Leschziner concluded that doctors have long known that changes in dreams can indicate changes in physical, neurological and mental health, and can sometimes be early signs of disease. But he says the new study is the first to show that nightmares can also help control a serious autoimmune disease like lupus, and is an important signal for both patients and medicine.
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