Does narcolepsy shorten life expectancy at age 63?

Question

Hello doctor,

I have had narcolepsy for almost 15 years now, and I am 63, and recently I read something online that really scared me about it affecting life expectancy in older adults. My sleep study last year showed REM latency of under 5 minutes, and I still have cataplexy episodes when I laugh or get surprised.

I am on Sodium oxybate, and it helps somewhat, but not completely. Does narcolepsy shorten life expectancy in older adults at 63, or was what I read just fearmongering, because honestly, it sent me into a spiral, and I just need a straight answer from someone who actually knows?

Kindly help.

Answer 1

Hello,

Welcome to icliniq.com.

I can understand why reading that information online would be frightening, especially when you have been living with narcolepsy for many years.

The good news is that narcolepsy is not normally seen as a disease that significantly affects a person’s lifespan. There are studies that show that patients with narcolepsy might be at slightly increased risk of developing certain diseases or experiencing accidents due to narcolepsy-related sleepiness, risk factors for cardiovascular diseases, or co-morbid disorders, but this does not mean that all narcoleptics will have shortened lives.

That you are 63 and have already been diagnosed and put on Sodium oxybate treatment is an important detail. Your REM (rapid eye movement) latency and ongoing cataplexy episodes confirm that the condition remains active, but they do not by themselves mean that your life expectancy is significantly shortened. The important things are:

Continuing management of symptoms.
Following up with your sleep specialist as regularly as possible.
Being physically active to the extent that is safe for you.
Managing other health problems such as high blood pressure, diabetes, or heart disease, if you have them.

A lot of the information mentioned on the internet does not provide much context and may appear much scarier than the facts actually are. From what you have shared here, what you read was likely much more alarming than what current research supports.

I hope you are satisfied with my answer. For further queries, you can consult me at iCliniq.

Thank you.