Meet Ashleigh: Living with Insomnia and parasomnias

8th March, 2024    |    By  Sleep Health Foundation    |     301

Ashleigh has living-experience of parasomnias, including sleep terrors and hallucinations, and insomnia. A parasomnia is a disruptive sleep disorder. Examples include abnormal movements, talking, nightmares and body actions during sleep. Insomnia is a sleep disorder in which people have difficulty falling asleep or staying asleep, or waking too early despite adequate opportunity for sleep. In this video, Ashleigh shares her experience from childhood through adulthood as someone who has and continues to suffer with sleep disorders, and the ways it impacts her life.


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 Living with Insomnia and parasomnias

Ashley:
“My name’s Ashley. I’m 28 years old and a student at Deakin University studying biomedical science. I also have a background in health, having worked as an operations manager and practice manager.

Childhood and Early Sleep Challenges:
As a little girl, sleep was challenging for me. I’m an identical twin, and both my sister and I were sleepwalkers and sleep talkers. Sharing a room for 14 years, we would sometimes wake each other up by sleepwalking or talking, doing some pretty weird stuff!

Adulthood and the Onset of Sleep Issues:
In early adulthood, my sleep changed significantly. During a period of high stress, I started experiencing hypnagogic hallucinations. These occur when you wake up in the middle of a nightmare and continue hallucinating as if you’re still in it.

The first time it happened, I hallucinated that I was being kidnapped from my bed. My partner was standing over me, screaming for me to stop. That was terrifying but sporadic until 2016, when I entered my 20s. The hallucinations escalated, and I began having frequent night terrors.

I’d wake up screaming for no apparent reason. I became scared to go to sleep, and that fear has stayed with me.

Managing the Fear and Seeking Help:
The thought of sleeping started triggering adrenaline for me. Initially, I was prescribed prazosin, a blood pressure medication that helps suppress adrenaline responses. While it helped manage my physiological reactions, the night terrors continued.

At one point, I tried recording myself to understand what was happening at night. Listening to those recordings caused so much anxiety that I had to stop. My psychologist advised me to avoid doing it, as it was making things worse.

The fear of sleep became so overwhelming that I couldn’t imagine reaching out for help in the middle of the night. Hotlines are often short-staffed at 4 a.m., and online messaging services aren’t available. I didn’t want to wake friends or family at that hour, so I felt isolated.

A turning point came when my housemate told me she’d been hearing me wake up screaming. Until then, I thought it was my problem alone. Knowing it was affecting someone else motivated me to seek treatment.

Treatment Journey:
At around 21 or 22, I brought up my sleep issues with my GP, with whom I had a great relationship. I pursued two avenues simultaneously: the hospital’s sleep and respiratory department and a clinic through Monash Health.

I underwent sleep studies and consultations with a neurologist to rule out any physical brain issues contributing to my symptoms. The insomnia I experienced was a secondary effect of my night terrors and hallucinations.

Challenges and Misconceptions:
There’s a general misconception that a few nights of poor sleep isn’t a big deal or that sleep is easy to catch up on. Insomnia is often dismissed, yet it impacts so many aspects of life—biologically, mentally, and socially.

Calling in sick due to a lack of sleep can be misunderstood as laziness. People don’t always grasp the difference between taking a mental health day and genuinely needing sleep to function.

For me, sleep became a calculated task. If I had a meeting on Wednesday, I’d avoid sleeping Monday, try to sleep as much as possible Tuesday, attend the meeting Wednesday, and then catch up on sleep Friday. If the meeting caused anxiety, I might not even sleep Tuesday, creating a vicious cycle.

Improvements Needed in Sleep Health:
For sleep health to improve, funding must increase—100%. More funding is needed for sleep studies, not just for sleep apnea but for other sleep disorders as well. There needs to be greater awareness of sleep disorders and better resources to diagnose and treat them.

We also need to support organizations like Lifeline, Kids Helpline, and Beyond Blue so they can extend their services to those struggling with sleep issues in the middle of the night, when help is often most needed.

Ultimately, we need more understanding and empathy around sleep disorders, but that won’t happen without proper funding and trained professionals to back it up.”

Video by sleephealthfoundation.org.au