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Learning from Pam about Narcolepsy

May 24th, 2011 2 comments
Guest Writer: Pam Hicks Thomason
I  have had narcolepsy since I was seventeen.  It manifested itself when I was in my senior year of high school. I was always a straight A student until my senior year, grades began to fall, as I could not stay awake in class.  I had a hard time remembering what I read when studying for tests.  My memory loss has gotten worse over the years.  I ended up dropping out of college my sophomore year, I just couldn’t stay awake in Chemistry and Biology during the daily lectures. At that time I didn’t know sleep was a disorder.  My experience was just the day time sleepiness.
Things seem to be better when I was pregnant and my children were small, then in my thirties the symptoms began to worsen again.  When my children were older and I went to work at a Bank, then eventually managing an office for a Financial Services I could not stay awake at my desk. After ten years I changed jobs when moving to Idaho.  My neighbor, was manager at JoAnn Fabrics and wanted me to be her Merchandise Manager .  It kept me on my feet and moving, not sitting and sleeping.  During that time other symptoms of narcolepsy began to manifest itself, sleep paralysis, vivid dreams, automatic behavior, cataplexy.
Narcolepsy is somewhat familial, genetic, although no one in my family has this disorder.  Narcolepsy is a neurological disorder and is in the hypothalamus part of the brain.  Your body begins to destroy hypocretin cells that regulate our sleep/wake cycle.
After years of research at Stanford Medical School, they have now discovered the genetic markers that make this disorder an autoimmune disorder.  It wasn’t until falling asleep at the wheel and going into a horse pasture that I talked to my doctor about this.
After a couple of sleep studies I was diagnosed with narcolepsy.  This took me some thirty three years after the onset of symptoms.  The only treatment for narcolepsy is stimulants to keep you awake.  I was put on Ritalin, which was hard for me to take, then when Provigil came out also a stimulant, but not an amphetamine, that helped a lot to keep me awake.
I went back to Walla Walla School of Nursing and started my passion in medicine at the age of fifty.  I worked at St Josephs Hospital in ER and Minor Care for about six years, until my cataplexy was so bad I had to retire.  It is a very debilitating disorder both physically and socially, but have managed to deal with it for over forty three years.  I help others with this through a Narcolepsy on-line support group.
A good web site is Stanford School of Medicine, or the Narcolepsynetwork.org for more detailed information.
Thank you Pam.

Living With Narcolepsy by Pam Hicks Thomason

May 24th, 2011 1 comment
Guest Writer: Pam Hicks Thomason
Narcolepsy is sometimes referred to as the invisible disorder. It is a neurological sleep disorder that can begin at any age, generally in the teens.  It affects approximately 1 in 2000 people.  There is no cure at this time.  It is an autoimmune disorder. Only 1 in 4 people with narcolepsy are ever diagnosed or are misdiagnosed.
There are five primary symptoms:
1. Excessive daytime sleepiness, which includes daytime sleep attacks that may occur with or without warning and which may be uncontrollable, persistent drowsiness, microsleeps, or fleeting moments of sleep, which may intrude into the waking state.
2.  Cataplexy, the second major symptom of narcolepsy, is a sudden loss of voluntary muscle control, usually triggered by emotions such as laughter, surprise, fear, elation, anger and even certain noises, sleepiness, etc.  The cataplectic attack may involve only a slight feeling of weakness and limp muscles (i.e., sagging facial muscles, a nodding head, buckling knees, loss of arm strength, garbled speech), or it may result in immediate and total body collapse (this is what I experience), during which the person may appear unconscious, but is actually awake and alert.  These attacks may last from a few seconds up to several minutes.  Cataplectic episodes are related to the loss of muscle tone usually associated with the normal dreaming stage of sleep called REM (rapid eye movement); as a protection against acting out one’s dreams, the muscles become immobile or paralyzed.
3. Disrupted or fragmented nighttime sleep, involves multiple periods of arousal.
4.  Hypnagogic hallucinations or vivid dreams, realistic, and often frightening dreams, these will happen upon falling to sleep or upon wakening.  In other words dreaming before you are totally awake or asleep.
5. Sleep paralysis is a temporary inability to move.  Either one or both of these can occur during the transition between sleep and wakefulness, while the brain is neither fully awake nor fully asleep.
 

There are a host of what I call secondary symptoms that you will not find in a medical book or that most sleep specialist will refer to.  Some of these are:

 

Automatic behavior, where you have these micro sleeps that last maybe only seconds to a couple of minutes and you will continue an activity that you are used to doing. Like I will continue to sew at my machine, with my eyes closed.  I don’t do a very good job and always have to rip it out, but none the less will continue to do it when asleep.

 


 

Living With Narcolepsy, part 2

May 24th, 2011 Comments off
By Pam Hicks Thomason
Many people with narcolepsy have frequent headaches to having migraines (luckily I don’t experience this).
Over sleeping is also a problem, unable to hear an alarm or phone ring.  I sometimes suffer from sleep deprivation, simply because I can not stay asleep.  I don’t have a problem falling asleep, which I do in less than one minute, but I have frequent arousals at night, thus not getting restorative sleep.
Social implications are vast. Memory loss is a problem, cognitive difficulty, intrusive thoughts, guilt, personality change, weight gain/loss, succeeding/failing, family dysfunction, isolation, depression, misdiagnosis, ineffective treatment, treatment delay, these are just a few things that I have found to be a problem with several of my on line narcolepsy friends.
You must first understand about normal sleep.  For the average person, a sleep period begins with about 90 minutes of non-REM sleep, stages 1,2,3,4 before the REM cycles begin.  When a person with narcolepsy falls asleep REM cycle begins first. Since the brain may not be fully asleep when REM/dreaming begins, the dream may be experienced far more vividly and realistically.  This is defined as a hallucination.  After waking, REM periods, or fragments of REM, may occur inappropriately throughout the day.
Since narcolepsy is a neurological-based sleep disorder involving the dissociation of sleep states.  Psychological problems can result from the individuals’s inability to cope with symptoms and their family’s misunderstanding of the disorder.
Narcolepsy does not affect intelligence, but learning cannot help but be affected by the symptoms.  Study, concentration, memory, and attention span may be periodically impaired by sleep.
Children with narcolepsy should be identified at the earliest possible age to prevent a pattern of failure from developing, thus fostering low self-esteem.
Adjustments in study habits may be continually necessary.
Diagnosis is determined from a sleep study.  A night time sleep test called a polysomnogram is done to rule out sleep apnea or other rem sleep disorders.  A daytime nap test called a MSLT (multiple sleep latency test) is done.  5 naps (20 minutes in length) two hours apart are done.  Genetic blood test can be done but are inconclusive.
Half the population carries the genetic markers for narcolepsy, but not every one developes the disorder.  A spinal tap can be done, people with narcolepsy have a low to no hypocretin levels in their spinal fluid.  These tests are usually done at hospitals such as Stanford or Mayo who have a research program in narcolepsy.

 

 

Living With Narcolepsy, part 3

May 24th, 2011 Comments off
I have managed to live with this disorder, for the most part during my younger years, not knowing it was a disorder.  You tend to adapt to how your body reacts and you just do the things you need to do to survive.  I learned early on that carbs tend to make me more sleepy, so I eat more protein snacks several times a day, which help keep me more alert.  I take 2-3 scheduled naps daily to help with the day time sleepiness.
I don’t drive, which is a real blow to my independence, but I couldn’t live with myself if I fell asleep at the wheel and killed some innocent family.  My husband of thirty three years has been very supportive of me and my disorder.  We don’t have the privilege of going to a movie or out to dinner (as I sometimes fall asleep during eating, which is very embarrassing in public) but I rent movies because it may take me several times playing them over to see them all the way through.
I have learned to keep my emotions very close at hand and not to over react to stimuli.  I can have a cataplexy attack simply by swating a fly.   I love to ride my bike, but have had to give that up lately.  A rabbit ran out in front of me, which gave me a startle, which gave me a cataplexy attack and down I went.  I’m sixty two and a little old to be falling off my bike.
I have to just take one day at a time.  I used to be such an organized person always planning ahead, but that has gone out the window now.  I’ve learned to be much more spontaneous, if it’s a good day, I better do it now!
During the periods that I worked I had been on various stimulants to keep me awake, but side affects were always a problem and I hated taking them.  Now that I’m retired  I simply take my scheduled naps and the ones that are not scheduled, but I don’t have to endure the side affects of drugs.
I try and help those newly diagnosed that find our narcolepsy forum on line and have gone out into my community to educate school counselors and school nurses of this disorder, so that children can get diagnosed early, with out going through most of their life, like myself not knowing what was wrong.
I hope this gives you a glimpse into this disorder.  I do my best to educate everyone I come in contact with, so many people get narcolepsy mixed up with sleep apnea and wearing a CPAP mask.  The only common symptom is daytime sleepiness, but cataplexy only goes with narcolepsy and no other disease or disorder.
Pam Hicks Thomson
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