My Decade-Long Narcolepsy Diagnosis

My journey of diagnosis and living with narcolepsy

I began to fall asleep at inappropriate times. For instance, during class, on the bus, before dinner, after dinner, etc. As a result, my parents and I became more concerned. I eventually saw doctors and therapists to work on improving my sleep.

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Please note, the information in this post is not a replacement for personal medical advice.
By Megan Conrad LMHC, NCC

Before reading this blog about Narcolepsy let me offer this quick disclaimer. I am a licensed clinician in counseling, but I am not a neurologist. This blog is about Narcolepsy as I personally experience it and the information I have learned throughout my journey. If you connect with any of these symptoms, please talk with your primary physician.  

At 16, I started to notice that I was feeling exhausted throughout the day. I wasn’t sleeping well and I had intense, vivid dreams. I figured it was normal, so I ignored it. Between school, a part-time job, and a social life, teens use a lot of energy. However, what I ended up experiencing was more intense than your typical teenager experience. The first symptom I developed, and the one that plagues me most today, was excessive daytime sleepiness. This is a condition that involves falling asleep repeatedly during the day, or feeling fatigued despite sleeping normally.

As for dreaming, I used to (and still do) feel like I would dream the entire night. I could wake up in the middle of the night and fall right back into my dream just minutes later. This is also something that I still experience, and I often joke that my dreams could be a script writer’s best friend.    

I began to fall asleep at inappropriate times. For instance, during class, on the bus, before dinner, after dinner, etc. As a result, my parents and I became more concerned. I eventually saw doctors and therapists to work on improving my sleep. At that time I believed it was my intense, vivid dreams that were causing the daytime sleepiness. I was diagnosed with anxiety and prescribed therapy. This helped, but I did not feel like it was the true reason.

A Couple of Decades and a Diagnosis

Two decades later I would come to find out that I had Narcolepsy. Suddenly the pieces all fell into place. Even the timeline made sense. For example, narcolepsy tends to develop in the early to late teenage years. Additionally, symptoms tend to worsen in severity after about 20 years. The worsening of symptoms are what prompted me to look back into it.

Narcolepsy can also cause sleep paralysis. In other words, inability to move while being conscious. This takes place when falling asleep or waking up. Another symptom is hypnagogic hallucinations, or vivid dreamlike experiences when falling asleep. And finally, cataplexy, which is involuntary muscle weakness in response to strong emotions. This can be mild to severe and affect different parts of the body. Insomnia can also take place with narcolepsy.

As I hit my 30s, I developed some of the symptoms mentioned above. For those who suffer with narcolepsy, excessive daytime sleepiness and quickly falling into dreams are the most obvious identifiers. For example, I can fall asleep within 3-7 minutes once my head hits the pillow. Additionally, I start dreaming in the same time. In a typical sleep cycle, humans move between light sleep and deep sleep. Rapid Eye Movement (REM), or dreaming, is right above deep sleep. For those who may not know, we get the greatest benefits from deep sleep. However, those with narcolepsy tend to stay in REM sleep more often and miss out on the longer periods of deep sleep.

Type 2

So why did it take so long for me to learn this? Well, there are many conditions that affect sleep. It is also not that uncommon to feel tired in our society with our on-the-go pace. However, I got lucky and happened to be with the right doctor at the right time. I was seeing a neurologist for another condition when I happened to mention my sleeping troubles. After discussing my symptoms she informed me about narcolepsy. This had never been considered before, and I felt like I might have found my answer.

Diagnosis is often delayed by testing in order to rule out different conditions. Narcolepsy is considered a “rare neurological condition” which affects 1 in every 2,000 people in America. There 2 types. Type 1 tends to be more severe with one-third of those patient’s experiencing cataplexy. Type 2 is typically without cataplexy and less severe. I have type 2.

Narcolepsy and Mental Health

So, how does narcolepsy affect your mental health? For starters, narcolepsy is a difficult condition to live with. It is exhausting, and you are constantly fighting your own body. This makes going to work, spending time with loved ones, or simply enjoying your hobbies a lot more difficult. Sometimes it feels like your body is begging you to sleep and it can consume your thoughts. In some cases, you can’t fight it anymore, and you’re in and out of sleep. It can make a person feel powerless. Not to mention, it can cause you to lose touch with friends and family. Personally, I think one of the worst parts of narcolepsy is feeling alone. It is a difficult thing to understand if you have not experienced it. This makes it difficult for people to relate. Narcolepsy also tends to create and worsen symptoms of anxiety and depression.

Treatments

The good news is that proper medications and a good support system can lessen the impact on a person’s life. It is important to find a good support system. This can be through friends, family, a mental health professional, or a narcolepsy support group. Or, a combination of all of those things. Finding a supportive therapist can help to improve self-esteem, challenge unsupportive beliefs, and validate your feelings. Therapy can also help you identify ways to take back control. Give Covenant Family Solutions a call, we are here to help.

If you take one thing from this blog and one thing only, please know you are not alone. It is possible to thrive while living with narcolepsy, and don’t be afraid to advocate for yourself.

Megan Conrad LMHC, NCC
Megan Conrad LMHC, NCC
Megan strives to create an environment where client’s and families feel welcome and cared about. She believes the client is the expert in their own lives and develops a collaborative working relationship with her clients.
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Megan Conrad LMHC, NCC
Megan Conrad LMHC, NCC
Megan strives to create an environment where client’s and families feel welcome and cared about. She believes the client is the expert in their own lives and develops a collaborative working relationship with her clients.
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