Iowa Sleep Blog

Narcolepsy...a Brief Overview

Wednesday, May 29, 2013

I think many of us have seen fainting goats or the you tube video of the cute dog having a fainting attack and assume that is what describes narcolepsy.  However, narcolepsy is a condition with a vast array of symptoms.  Not every individual with narcolepsy has those "fainting attacks" also known as cataplexy.  Narcolepsy is actually as common as being diagnosed with Parkinsons or MS.

Narcolepsy is defined as a lifelong neurologic condition in which the body enters into REM sleep more quickly then those without the condition.  Individuals with narcolepsy cannot maintain the boundaries between REM sleep and wake due to a low level of a chemical called hypocretin in the brain. One of the most common symptoms of narcolepsy is excessive daytime sleepiness.  Studies have shown people with narcolepsy actually have normal amounts of sleep over 24 hours but it is often in small increments.  Individuals are also not able to sleep consistently throughout the night. 

Narcolepsy with Cataplexy affects >60% of individuals with the diagnosis of narcolepsy.  Cataplexy is a condition in which there is sudden loss of body muscle tone or strength.  This cataplectic event can be triggered by emotions such as laughter, sudden feelings such as anger, fear or surprise and possibly being intimate with a loved one.  Cataplexy can be something as minor as a loss of facial tone.  Remember, there is no exact description of how one is affected with narcolepsy or cataplexy

Most people start becoming aware of the symptoms around ages 10-25.  Some individuals find that symptoms can become more prevalent as they become older.  It may show up simply as just being tired all the time, unable to focus or being unable to sleep all night long.  With good sleep hygiene and assistance of a sleep professional you can decrease the symptoms of narcolepsy and cataplexy. 

So lets say you are tired all the time and you may or may not have cataplectic events.  You will first meet with our Doctor to figure out exactly where your problem of sleepiness originate.  The Doctor will speak with you for a period of time for your medical history, your sleep history and the Doctor will request a list of your medications.  This is very important because some medications can mask the symptoms or alter your sleep patterns which may hinder a correct diagnosis.  You may have to taper down or stop taking a medication for period of time before we further study your sleep.  Please do not alter your medication until a Doctor tells you to do so.  Next, the Doctor may order a polysomnogram.

Polysomnogram (PSG) is a study of your sleep pattern performed at one of our facilities.  During this testing we are able to exclude you from other conditions such as Obstructive Sleep Apnea.  In a later blog I will describe what happens during your PSG, but you can also look for this information on our website.  If there is some indication that narcolepsy is a possibility, the Doctor will also order a study to be performed the next day after the PSG called a MSLT.

A MSLT (multiple sleep latency test) is a series of opportunities in which we allow you to fall asleep.  Most opportunities start at 8:00am and are allowed, as directed, every two hours.  You will not be allowed to drink caffeine this day.  The Doctor will be looking to see how quickly you fall to sleep and which to which stages of sleep you enter.

So you have been diagnosed... now what?  We are definitely here to help you.  Treatments usually consist of medications and behavior changes.  Medications can significantly improve symptoms of narcolepsy but most importantly are behavior changes and just getting to know your body.  As with all individuals, sleep hygiene is very important and one must start with this. 

Try a regular strict sleep schedule.  Set a time to go to sleep and a time to rise in the morning.  I know with our hectic lives this is almost impossible but this is very necessary.  You must train your body when it is allowed to sleep and when it must be awake.  If you find you need a nap or two during the day, make sure they do not interfere with getting your period of sleep at night.  Some individuals find that one longer nap is enough.  The other items necessary for good sleep hygiene are as follows; Use the bedroom only for sleep and intimacy, relax before bedtime and create a routine, avoid alcohol and caffeine, avoid bright lights and hour before bedtime (this includes computer screens), and exercise regularly.  Exercise not only is good for our brain and mind but it will make you feel more alert throughout the day. 

Support is there for you.  Whether it be loved ones or an online support group, there are many resources available to you.  Learn all you can about narcolepsy and your body.  Becoming in tune with your body can alert you to a cataplectic event and you just may be able to stop it from occurring.  Reach out to loved ones, your support group and of course us here at Iowa Sleep.  You are not alone.  Support groups online have great information and stories of what others have found help them out the most. 

Be vocal.  You don't have to sing it from the rooftops but reach out and inform others.  This is a condition in which you are protected from some of the challenges of life.  The Americans with Disability act and state laws require employers to reasonably accommodate your life with this condition.  We have a letter that can be given to your employer to educate them of your condition.  If naps are necessary during the day, they should be able to accommodate this in some way.  You know your body and you can adjust your schedule also.  Be your own best advocate.  Driving must also be carefully examined especially if you have the cataplectic component.

With knowledge of your condition, how your body behaves and great support, you will be able to live a very healthy, unrestricted and active life.