Apart from experiencing the major symptoms of narcolepsy — excessive daytime sleepiness, involuntary loss of muscle tone (cataplexy), sleep paralysis, and hallucinations — people with narcolepsy also often report symptoms of dissociation. Symptoms of dissociation include feeling detached from reality or losing your sense of identity. In a recent study, 62 percent of people with narcolepsy said they experienced dissociative symptoms more often than people in the general population.
The Diagnostic and Statistical Manual of Mental Disorders defines dissociation as the interruption of the following processes:
Scientists are not completely sure how and why people with narcolepsy can develop psychiatric symptoms like dissociation. However, mental health researchers think that changes in the level of a hormone called hypocretin could lead people with narcolepsy to also have dissociative symptoms. It could also be that the sleep disturbance caused by narcolepsy leads people to dissociate.
Fortunately, treatment for dissociation is available. Treatment for this symptom centers around psychotherapy, improving sleep habits, and physical activity.
MyNarcolepsyTeam members often talk about their dissociative symptoms, like feeling detached from reality. One member said, “I get caught up in my dream state … It can be terrifying! I live in two realities.” Another member confessed, “Some days, I don’t know if I dreamt or lived it.”
The National Alliance on Mental Illness lists six main signs and symptoms of dissociation:
MyNarcolepsyTeam members can relate to these signs and symptoms of dissociation. One member said this about memory loss: “Things are getting foggy, and I am having a hard time remembering if I have done something or forgot to do something.”
“Having a hard time differentiating between dreams and reality. I feel hazy and separated from my body,” said another member, regarding depersonalization.
One member described dissociative experiences with derealization. They said, “Sometimes, it’s difficult to know what is real or if something was dreamed.” About loss of identity, a member reported, “Now I feel like I don’t know who I am. My identity has been stolen.”
Another member shared their mental health issues, noting, “I’m struggling with depression. However, I haven’t lost sight of the fact that there is a lot of hope and help available.”
About feeling numb, one member said, “I’m so tired of all this … I’m numb mentally and physically.”
Because people with narcolepsy have an underlying cause of their dissociative symptoms, they should not generally be diagnosed with a formal dissociation disorder. A dissociation disorder is a mental health or psychiatric disorder that comes in three forms:
Dissociative amnesia is memory loss that is more serious than regular forgetfulness. Dissociative amnesia is often linked to post-traumatic stress disorder (PTSD) but not to a medical condition like narcolepsy. If someone with this disorder wanders away in a state of confusion, mental health experts call this behavior dissociative fugue.
Previously known as multiple personality disorder, dissociative identity disorder involves a person alternating separate identities. Each identity may have its own personality. People with dissociative identity disorder often also experience dissociative amnesia and dissociative fugue.
Depersonalization-derealization disorder makes a person feel detached and also like the world around them is not real. Although both depersonalization and derealization are very common in people with narcolepsy, this disorder can also happen when there is no underlying medical condition, like narcolepsy, to explain it.
Many people in the general population develop dissociative symptoms from PTSD, which can be caused by a tragedy, accident, or crime. However, research shows that people with narcolepsy do not tend to have more traumatic events than people in the general population. With that, experts have suggested two other possibilities to explain dissociative symptoms in narcolepsy.
The brain normally releases the hormone hypocretin, which plays a part in switching the brain’s sleep-wake cycles. However, people with narcolepsy have low levels of this hormone. Researchers think that the body’s immune system destroys cells that make hypocretin, causing low hypocretin levels and the sleep disturbances of narcolepsy.
Hypocretin also attaches like a key in a lock to many brain regions that regulate mood and emotion. Low hypocretin depresses activity levels of these emotional brain centers, which may be the reason why many people with narcolepsy experience dissociative symptoms.
A recent psychology study suggested that sleep interruptions are linked to dissociative symptoms. When someone suffers from sleep loss, they can lose their sense of self-awareness, their perception of reality, and their ability to control their emotions, causing them to dissociate. Sleep deprivation can play a role in many disorders, like schizophrenia, borderline personality disorder, or narcolepsy.
Medication can help many symptoms of narcolepsy, but research shows that narcolepsy medication does not affect dissociative symptoms. Instead, there are three nondrug treatment options for a person with narcolepsy who is also struggling with dissociation:
A psychologist with expertise in narcolepsy may be able to help someone with narcolepsy and dissociation. Cognitive behavioral therapy (CBT) is a kind of psychotherapy that helps a person identify inaccurate mental patterns and change them.
CBT has been shown to improve sleep quality, excessive daytime sleepiness, and emotionality in people with narcolepsy. Sleep loss can make a person with narcolepsy more vulnerable to dissociation, so improving sleep with CBT may help manage dissociative symptoms.
Changing sleep habits can improve sleep quality, which may affect dissociative symptoms. Research shows that the best way to improve excessive daytime sleepiness is to take scheduled naps. A person can alter their daily routine to include two to three naps each day, ranging from 15 to 20 minutes.
Daily physical exercise can have a positive effect on sleep patterns. Research shows that regular exercise can improve sleepiness and keep a person with narcolepsy from falling asleep as much during the day. These benefits may translate into better overall sleep and fewer dissociative symptoms.
MyNarcolepsyTeam is the social network for people with narcolepsy. More than 8,000 members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.
Do you have detached feelings with narcolepsy? Share your experience in the comments below, or start a conversation by posting on MyNarcolepsyTeam.
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