Understanding Sleep-Related Hallucinations in Children With Narcolepsy

Imagine seeing a giant spider crawling on your wall. You reach out to swat it, but your hand goes right through. The spider disappears. This might sound like a scary dream.

But for some children with narcolepsy, these kinds of experiences can happen while they are still partly awake. These are called hallucinations. Hallucinations can be a symptom of pediatric narcolepsy.^1,2

What are sleep-related hallucinations?

Hallucinations are when someone sees, hears, smells, tastes, or feels things that are not actually there. They are not just dreams. Dreams happen during sleep. Hallucinations can happen right before falling asleep (hypnagogic hallucinations) or just after waking up (hypnopompic hallucinations). They can also happen during the day if someone with narcolepsy falls into a short sleep period called a "microsleep."^1-3

Why do hallucinations happen with narcolepsy?

Experts believe that hallucinations in children with narcolepsy are related to the way the brain transitions between sleep and wakefulness. In other words, parts of their brain can be awake while other parts are still asleep. This can lead to unusual sensory experiences.^2,3

Think of it like your child’s brain playing tricks on them. Their brain mixes up wakefulness and sleep. This mix-up can cause these strange sensory experiences.^2,3

What do hallucinations look like?

Hallucinations can be different for everyone. Some children might see scary creatures or monsters. Others might see familiar people or objects that seem distorted or out of place. Some children might hear voices or sounds that are not there. Others might feel like they are floating or falling.^1-3

Hallucinations can feel very real for a child. They might not understand what is happening. This can make them feel confused and scared.^1-3

How can I help my child?

If your child has narcolepsy and experiences hallucinations, talk to them about it. Here are some tips.

Listen calmly and patiently

Let your child describe what they are seeing, hearing, or feeling. Do not dismiss their experiences. Even though you know the hallucinations are not real, they affect your child in real ways.²

Explain what hallucinations are

Use simple words that your child can understand. Tell them that hallucinations are a common symptom of narcolepsy. Many children with narcolepsy experience these hallucinations.¹

Explain that their brain is mixing up being awake and being asleep. This mix-up causes them to see, hear, or feel things that are not really there. Reassure them that they are not going crazy and there is nothing wrong with them.¹

Help your child understand that hallucinations are not real

Explain that these sensory experiences are like dreams that happen while they are partly awake. They are not a sign of danger. They cannot hurt them.^1,2

Encourage your child to talk about their hallucinations

Talking about these experiences can help your child feel less scared and alone. Let them know they can always talk to you about what they are going through.^1,2

Work with your child’s doctor

Your child’s doctor can help diagnose narcolepsy and recommend treatment options. Treatment might include medicine, lifestyle changes, and cognitive behavioral therapy (CBT). These treatments can help manage the symptoms of narcolepsy, including hallucinations.^1,3

Create a safe and supportive environment

Make sure your child feels safe and comfortable talking about their experiences. Offer them reassurance and support.^1,2

Coping with hallucinations

Here are some things your child can try to do when they have a sleep-related hallucination:^1,2

• Try to stay calm – Remind your child to take deep breaths and try to relax.
• Remember that it is not real – Help your child develop a statement they can say to themselves during a hallucination. For example, they could say, "This is not real, and it will go away."
• Change their environment – Sometimes, changing location or doing a different activity can help stop a hallucination. For example, if your child is seeing something scary in their room, they could go to another room.
• Talk to someone they trust – Talking to a parent, friend, or therapist can help your child feel more grounded and less scared.

Hallucinations can be a difficult experience for children with narcolepsy. However, with understanding, support, and proper medical care, children can learn to manage their hallucinations and live full and happy lives. Remember to be patient and understanding. Your support can make a big difference.^1,2