Thursday, August 2, 2012

Narcolepsy A Matter of the Brain

Below is a picture of my daughter.  She is beautiful and vibrant and leads a busy life...but her daily life is a life of exhaustion.  Why?  She has narcolepsy.  Even when she was little she never slept through the night.  We thought perhaps she had sleep apnea, so when we had her tonsils taken out we thought her sleep would improve and it did slightly.  But as a preteen she also had Lyme's disease after which her sleep problems worsened along with her health.  Is there a correlation?  New studies may show some correlation between Neurological Post Treatment Lymes disease and narcolepsy / chronic fatigue, but nothing conclusive yet.

Narcolepsy Sleep Problems
Is she sleeping or is she awake?
Narcolepsy affects many!
Whatever the cause - it is a frustrating autoimmune disease that can wreak havoc on your sleep and your life!

My daughter does not have the type of narcolepsy where if she sits she falls asleep, which is how most people envision a narcolepsy sleep disorder.  Instead her brain really doesn't know when she is supposed to be asleep or awake.  So if she is sleeping and dreaming, those dreams actually are real and she acts them out.  When she was younger, she had a loft bed.  She was in one of her lucid dreams (narcoleptics reach REM (Rapid Eye Movement) within the first few minutes of sleep, whereas other people fall into REM sleep about 100 minutes into sleep).  She thought her mattress was falling on her so she jumped over the side and out of the bed.  It is five feet off the ground.  Luckily she didn't get hurt.  That is the sleep side of her life.

The awake side is a little more scary.  Two years ago while starting school to be an aesthetician, she was driving and missed her exit.  She called me in a panic.  We have learned that part of her neurological sleep disorder means she doesn't go anywhere new without someone else taking her there first.  (This is also part of a learning disorder - visual perception processing disorder. But that is another blog.)

I told her to tell me where she was and we got her back in the right direction.  During this time however she confessed, "I think I fell asleep."  She no longer drives any long distances by herself.  In order to drive, she is required to either take a sleeping aid or something to keep her awake.  Because she is small in stature; the medications really mess with her.  There are prescription medications for narcolepsy treatment, but you need to check with your doctor and pharmacist to see which is best for you.  Because of her physical responses, she has opted for natural alternatives.  She may go back on the sleep medication however, which is highly regulated and unusual in its dosages, but at least helps her sleep.

My daughter is now 20 and through my research has new hope.  She doesn't feel so alone with this disease.  Because it isn't just the sleep. She suffers from narcolepsy with cataplexy.  This is when her body physically goes to sleep although she is awake.  She is not alone though according to the National Institute of Health, "...one in every 3,000 Americans" is affected by this sleeping disorder.

What is narcolepsy?

The National Institute of Neurological Disorders and Stroke define as:

"Narcolepsy is a chronic disorder of the central nervous system characterized by the brain's inability to control sleep-wake cycles."

There are many studies and reports on narcolepsy, but this site provides clear and simple information on narcolepsy.

Although my daughter has adjusted her life and doesn't let it stop her from having fun, my biggest concern for my daughter and others like her is that a lack of sleep associated with sleeping disorders can cause health problems.  "Even the loss of one hour of sleep time that accumulates for several days can have a powerful negative effect on daytime performance, thinking, and mood", according to the Sleep Foundation's Sleep Wake Cycle Study.  And even more astounding is the Center for Disease Control article on sleeping problems which indicates, "Insufficient sleep is associated with a number of chronic diseases and conditions—such as diabetes, cardiovascular disease, obesity, and depression—which threaten our nation’s health."

If you have narcolepsy, another type of sleep disorder, such as insomnia, sleep apnea, or restless leg syndrome (RLS), or have problems falling asleep, then I would encourage you to see a doctor and get a sleep study test.

A lack of sleep can cause difficulty in your daily lives and wreak havoc on your health.  So improve your life and your health and get help with your sleep.  To find out some of the health risks and how to sleep better, check out our other blogs:
At FamilyWize we truly seek to help you find not only affordable prescription medications for sleep disorders, but help you find ways to live healthy.  If you suffer from a sleeping problem, check our Drug Look-Up Tool to see if we cover your sleep medication and can help you get a discount on your prescription medicine.

Donna Cornelius
Content Manager and Editor for FamilyWize


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