Narcolepsy Information
And Indiana Support Group
This page is dedicated to giving information and help to people with Narcolepsy and their families. My life is devoted to God, My family, and educating others on Narcolepsy.
Kristina Heeter narcolepsy_indiana@insightbb.com (updated 3/21/08)
Indianapolis Support Group
Changed Times and
Dates!
I finally have times and a place to get
together!
7250 Clear Vista Dr (professional
building)
behind Community North Hospital
3-5PM 3rd floor multi-service
room
Apr 12th, Jun 14th, Aug 9th, Oct 11th,
Dec 13th
The 2nd Sat of every EVEN month!
Narcolepsy is very much misdiagnosed and misunderstood! Common misdiagnoses include depression, ADD and schizophrenia! Really! I mean take the tests for them; if you answer honestly you're diagnosed with them even if you don't have it. The tests are not made with Narcolepsy in mind. Most people cannot have Hallucinations like we do, without medications or drugs it's an impossible task. Nor do most people lack energy that's not caused by something. Did you know that Narcolepsy is believed to be as prevalent as MS but only 250,000 American's have been diagnosed with it? Many of the people who have Narcolepsy actually developed symptoms as early as the end of grade school through college years but it usually takes 14 years from the onset of symptoms to be diagnosed! During this time these kids are trying to finish school, find a job, start a family, all on sleep deprivation and a world that sees them as lazy and irresponsible! Most people with Narcolepsy can take medications and live a mostly normal life with few changes and limitations to their lifestyle and some support of friends, family, and a good boss. But many, like me, are completely disabled by it and it affects every aspect of our daily routine.
Much of the information listed on this page is taken from Brian Kroll's Narcolepsy web site. He can no longer keep up with his site and has given me permission and full access to his information. Thanks Brian for working so hard for so many years and touching so many lives!
"Difficult lives are not punishments, but rather opportunities for astonishingly strong spiritual growth. These experiences are significant to the soul. Learn to cherish yourself for what you are. Find a stronger connection to the universe. Realize your potential and love the true image of yourself. Learn to let intuition guide you to people and places. Let go of committing yourself emotionally to a single desired outcome. Look instead to your soul, diversify expectations and surrender control. Realize the possibility of the unexpected and learn from the process, no matter the outcome. Treasure the journey, release the results."
Message author: laura j evert
The following is a good brief synopsis of what Narcolepsy is taken from Stanford Center of Narcolepsy. (Things added in by parenthesis are my additions.)
http://www-med.stanford.edu/school/psychiatry/narcolepsy/
EPIDEMIOLOGY
Narcolepsy is a frequent disorder: it is the second leading cause of
excessive daytime sleepiness diagnosed by sleep centers after obstructive sleep
apnea. Studies on the epidemiology of narcolepsy show an incidence of 0.2 to 1.6
per thousand in European countries, Japan and the United States, a frequency at
least as large as that of Multiple Sclerosis. In many cases, however, diagnosis
is not made until many years after the onset of symptoms. This is often due to
the fact that patients consult a physician after many years of excessive
sleepiness, assuming that sleepiness is not indicative of a
disease.
(They are finally beginning to
understand the system behind the defects in Narcolepsy and what causes the
symptoms of this disease. But as of yet they do not know what triggers the
disease to begin. I was fortunate to be part of the research to make medical
history to document that a particular neurotransmitter [a chemical that
transmits a specific set of information from one area to another] called
Hypocretin [or Orexin] is at fault. Hypocretin is produced by one cell and then
received by two different receptors (receptor 1 on the and receptor two). In
90+% of people with Narcolepsy they are losing the production cells for this
chemical. When they tested the spinal fluid, the levels were undetectable
(meaning if you are losing the ability to produce the chemical you will not have
any in your system to show up). In the other 10% they are probably losing the
receptors for the chemical. (Either of these receptors could be damaged or
missing). Most of these 10% test with normal levels of hypocretin 1 (meaning
it's produced and received but we cannot test hypocretin 2 because you have to
mash up some brain cells to test how much is in them, and well we can't do that
on living beings! So the theory is they might be losing the receptor 2 cells
much like the dogs with narcolepsy models. Only with dogs, its usually purely
genetic malformation and not an auto-immune or environmental trigger like they
believe most PWN to be). But their symptoms and other tests were conclusive of
Narcolepsy. And in only a few cases so far (I was told I am one of them) they
believe I might be losing the receptor1 for this chemical. Which means I make it
but I do not get it out of the cerebral spinal fluid and use it. My test results
were very high. They have since found that some people without Narcolepsy can
have elevated levels if they are sleep deprived, but I was relatively rested (as
much as one with Narcolepsy can be) and it was first in the morning. Also both
the other person and I have had brain damage. Mine is only possible damage, I
was born with a cyst in my sinuses that grew back through the right eye socket
down the nerve and into the brain. At the time they took it out I was three, and
they told my parents there was no permanent damage, now I'm not so sure. The
cyst cells could have been similar to the Hypocretin cells and triggered the
body to attack them. But, I didn't have any real symptoms till about 9. See My Story
for the rest. So far, the only scientific statement can be made is of those with
no Hypocretin in the system, all others are speculation. We will not know about
mine until others are found and a few of us have died and donated our brains to
study. So it's gonna be awhile, cause I'm still using mine! [Most of the time
anyway] They are coming out with much better medications to treat Narcolepsy and
hopefully in the next few years those 90% that are losing the production of
Hypocretin may see either an injection of cells into the brain [like they have
been doing for some with Parkinson's] to permanently cure them, or a shot or
pill to take every day that will keep their levels even and therefore eliminate
their symptoms. As for the other 10% they are hoping to uncover the answers and
treatments as education continues. There is a new medicine called Xyrem. The
trials were incredible. It forces the body to sleep deeper, more restful,
healing sleep and therefore people with Cataplexy episodes experience far less
number and severity, it also tends to help EDS quite a bit too. See Narcolepsy
Technical Stuff and Medications
for more info.)
SOCIOECONOMIC IMPACT
Narcolepsy is a very disabling and under diagnosed illness: the effect of narcolepsy on its victims is devastating. Studies have shown that even treated narcoleptic patients are often markedly psychosocially impaired in the area of work, leisure, interpersonal relations, and are more prone to accidents. These effects are even more severe than the well-documented deleterious effects of epilepsy when similar criteria are used for comparison.
The large majority of narcoleptic patients in this country are still undiagnosed, and narcoleptic subjects are most often diagnosed only after many years of struggle. In one recent study, the mean number of years between the onset of symptoms and correct diagnosis was 14 years. Since the symptoms of narcolepsy usually appear during adolescence, this means that most narcoleptic patients are diagnosed too late to prevent the dramatic impact of the disease on their personal and professional development.
SYMPTOMS
The main symptoms of narcolepsy are (EDS) Excessive Daytime Sleepiness and abnormal REM (Rapid Eye Movement/Dream Sleep) sleep: Narcolepsy is not only a serious and common medical problem, it also offers basic sleep researchers a unique opportunity to gather new information on the central mechanisms regulating REM sleep and alertness. Since the 1960s it has been known that several of the disabling symptoms of narcolepsy, such as sleep paralysis, cataplexy and hypnagogic hallucinations, are pathological equivalents of REM sleep. In (SP) Sleep Paralysis, a frightening symptom considered to be an abnormal episode of REM sleep atonia, the patient suddenly finds himself unable to move for a few minutes, most often upon falling asleep or waking up. During (HH, can also be upon wakening known as Hypnopomic) Hypnagogic Hallucinations, patients experience dream-like auditory or visual hallucinations, while dozing or falling asleep. (C) Cataplexy, a pathological equivalent of REM sleep atonia unique to narcolepsy, is a striking, sudden episode of muscle weakness triggered by emotions (also smell, visual like strobe or florescent or special effects in movies, and physical triggers are known, every one is different). Typically, the patient's knees buckle and may give way upon laughing, elation, surprise or anger. In other typical cataplectic attacks the head may drop or the jaw may become slack. In severe cases, the patient might fall down and become completely paralyzed for a few seconds to several minutes. Reflexes are abolished during the attack. (But consciousness is fully in tact! You hear, sometimes see but cannot respond, very scary!) (They missed Automatic Behavior, this is a big one for a lot of people. This is where your mind shuts off, but your body and brain still function, you do things without remembering what you've done because you've done it a thousand times. Unfortunately we don't always get it done right! Very scary if you end up like this driving! You know how to get home but you may not stop for lights or other vehicles, but you'd never run off the road!)
DIAGNOSIS
Narcolepsy can be diagnosed using specific medical procedures: the diagnosis of Narcolepsy is usually easy if all the symptoms of the illness are present. More often, however, the symptoms of dissociated REM sleep such as Cataplexy are mild, and a nocturnal polysomnogram, followed by the multiple sleep latency test (MSLT) is suggested. This test, performed at a sleep disorders clinic, will confirm the daytime sleepiness by showing a short sleep latency of usually less than 5 minutes, as well as an abnormally short latency prior to the first REM period (SOREMPs). The nocturnal recordings also exclude other causes of daytime sleepiness, such as Sleep Apnea or Periodic Leg Movements.
Taken from J Clin Neurophysiol 2001; 18:78-105
The diagnosis is based primarily on the clinical symptoms, obtained during a diagnostic interview. Unfortunately, taking a clear history may be hampered if patients have read patient information forms before consultation. Therefore, the importance of specific questioning must be underlined. Ever since the first description, more than a century ago, there have been controversies about diagnostic criteria. Currently, the criteria in the International Classification of Sleep Disorders (ISCD), which includes clinical criteria and in case of doubt ancillary investigations, are widely accepted (ICSD, 1997):
A. The patient has a complaint of excessive sleepiness or sudden muscle
weakness.
B. Recurrent daytime naps of lapses into sleep occur almost daily
for at least 3 months.
C. Sudden bilateral loss of postural muscle tone
occurs in association with intense emotion (cataplexy).
D. Associated
features include
1. Sleep Paralysis
2. Hypnagogic/Hypnopomic
hallucinations
3. Automatic
behaviors
4. Disrupted major sleep episode
E.
Polysomnography demonstrates one or more of the following:
1. Sleep latency less than 10 minutes
2. REM sleep latency
less than 20 minutes
3. An MSLT that demonstrates a mean
sleep latency of less than 5 minutes
4. Two or more
sleep-onset REM periods
F. Human leukocyte antigen (HLA) typing demonstrates
DQB1*0602 or DR2 positivity
G. No medical or mental disorder accounts for the
symptoms.
H. Other sleep disorders (e.g., PLMD or central sleep apnea
syndrome) may be present but are not the primary cause of the symptoms.
Minimal Criteria: B plus C, or A plus D plus E plus G.
There is mounting concern, however, that these criteria may be too broad...The diagnosis of Narcolepsy is universally accepted to be certain in patients with EDS and Cataplexy. Controversies arise in patients without cataplexy... However, despite all doubts, the ICSD criteria are still applicable in today's practice and are a sufficient guide for (pharmacotherapeutic) treatment...Recent studies question both the sensitivity and specificity of the MSLT in the diagnosis of Narcolepsy...For example, patients without any sleep complaint may fulfill the MSLT criteria, whereas only 70% of patients with clear cataplexy who these abnormalities...
And boy don't I know it. I've had tests come out all different and most of the doctors I've seen ONLY want an MSLT done perfectly or they won't treat you. I've had such bad Cataplexy right in front of them that the nurses had to help me walk and they couldn't understand my speech, but they still didn't accept me because my tests for them turned out too normal. Sleep is particular; you can sleep well or horrible at any particular night. A good doctor will use the PSG (overnight) and MSLT (day nap study) to exclude other possible causes like apnea or restless legs. Then if you do have one of these other problems they will treat you for those and then do another study to see if you still exhibit problems after treatment for those.
What the tests are like...
A nocturnal Polysomnogram is lots of fun! They hook up electrodes [little round metal things with wires that will pick up brain activity] with a dissolving glue. [That's lots of fun to get out of your hair!] They let you sleep overnight and watch and record your breathing [sensors just under your nose] and eye movement [sensors near your crow's feet lines] and also leg movements [sensors on your legs] and a little oxygen clip on your finger. Some people have problems falling asleep even if they're sleep deprived with all that stuff on! They need to exclude these other possible causes for daytime sleepiness, before they can diagnose Narcolepsy.
An MSLT or Multi Sleep Latency Test is done the following day. If they do not do these back to back it is not a proper diagnosis. Also make sure you are not on any medications that could reduce REM sleep such as an anti-depressant like Paxil or Prozac [You need to slowly decrease dosage until you are completely off them or you could go into rebound [worse symptoms than before for a few days] and be completely off of them for about 2 weeks prior to testing to make sure you are back to your pre-medicated self.] Also remove yourself from stimulants, even over the counter, or you may end up messing with the results. They take off the oxygen sensor and the leg electrodes and breathing electrodes but leave on most of the others. You stay up and every 2 hours or so they will ask you to lay down and try to go to sleep. They then record how fast you fall asleep and quickly you go into REM sleep. If you fall asleep quickly (less than 5 min or so) and go into REM sleep quickly in 3 out of 5 naps then the diagnosis of Narcolepsy is made. Normal people do not go into REM sleep quickly.
A normal sleep study will look like the following...(I copied this from a website that is no longer active but I've thought it to be the best, most concise explanation I've seen. I've embellished with a little of what I've read in other articles). www4.umdnj.edu/med/slepsymp.html
Stage 1 Sleep: is the initial stage upon falling to sleep. This is when you are somewhat aware of your surroundings (you can hear and still respond, but feel warm, heavy and disoriented). This consumes approx. 2-5% of a normal nights sleep.
Stage 2 Sleep: Follows stage one sleep. You are not aware of your surroundings. It composes approx. 45-55% of a normal nights sleep.
Stage 3 Sleep: called one of the "slow wave" sleep stages because brain activity slows down dramatically as the person progresses to stage 4 sleep.
Stage 4 Sleep: "slow wave sleep" similar to stage 3, brain activity slows dramatically. Stages 3 and 4 combined compose 13-23% of a normal nights sleep.
Stage 5 Sleep (or REM Rapid Eye Movement) is a very active stage of sleep and has often been called paradoxical sleep as the brain is very active and the reasons and uses of this sleep is still trying to be understood, and a reason why the study of Narcolepsy is such a big contribution to the understanding of sleep and why we need it. REM sleep composes 20-25% of a normal nights sleep. It usually takes 90 min to enter into REM sleep.
Active Sleep: Breathing, heart rate and brain wave activity quicken. Vivid Dreams can occur. Sleep Specialist call this 5th stage of sleep "REM" rapid eye movement sleep because if one is to watch a person in this stage, their eyes are moving rapidly about. After REM stage, the body usually returns to stage 2 sleep. In Narcolepsy we enter into REM sleep almost immediately.
Quiet Sleep: The body cycles or "drifts" through the four stages of sleep: Stage 1,2,3, and 4. Heart rate and respirations become slower. The body then returns to stage 2 before moving into "active sleep". Without sleep our bodies and minds suffer. Slow wave sleep is when the body processes muscle waste, fixes damage, fights infection, and so on. Therefore people who are sleep deprived like sleep apnea and Narcolepsy often are sick more often, and take longer to heal. We usually do not have much if any Stage 3 and 4 sleep.
My 2 Cents worth:
With the right Treatments, most people with
Narcolepsy can live lives with little restriction. With the new medication Xyrem
I believe less than 10% are truly disabled enough for disability. I do
not endorse getting disability if you can live with medications and take care of
your family. However there are those who cannot deal with the
medications or their side effects, or the symptoms are still not under control
enough to make them dependable for normal work. I am one of these. Now that I'm
on Xyrem, and my kids are both in school. I work part time for the school
cafeteria, I volunteer for Angel Flight (volunteer pilots who fly medical needs
patients to treatments) where I pick up anyone coming into the Indy area and
take them to their treatments, and I work on this web site as well as trying to
start a support group. I hope also to be able to speak in the local High Schools
and Colleges and Doctors in the area to educate people on Narcolepsy so others
will not have their adult lives and hopes ruined before they get a diagnosis.
People with Narcolepsy are not lucky to have an excuse to sleep more, we
are plagued with never getting restful sleep, and never feeling awake. Our
families suffer, our careers suffer, our health suffers. We may not be able to
participate in many activities because we are worried about falling asleep or
having Cataplexy in public. Narcolepsy is something that one moment you can feel
fine and the next you need to crawl into bed. When the urge to take a nap or the
moment cataplexy is triggered is much like the feeling you are going to vomit.
You may be able to hold it off for a few but it is uncontrollable and you know
it will happen. No amount of self-control, No amount of exercise or vitamin
regiment is going to solve this problem. Having an understanding that the person
is doing the best they can, and will let you know when they can do something is
the best someone without the disease can offer. Don't try to take over their
life, but don't exclude them from something. Give them notice to prepare, and be
OK if they suddenly can't make it, don't take it personal. For those with the
disease, don't use it as an excuse if you really can but don't want to. (Don't
cry wolf!) Surround yourself with people who understand, and if someone new
comes along within the group you will find that you need not explain a thing, if
something happens your friends will explain for you. If someone doesn't
understand, there are too many others that will, to worry about him or her.
I also want everyone to pay attention to their driving and their
bodies! The researchers know that people with Narcolepsy know our bodies and
understand the privilege of driving! Some of us, even with medication, should
not drive if you fall asleep. You know who you are! Most of us with medication,
know our bodies and our limits, unlike those without Narcolepsy that say "I'm
just a little sleepy" and keep going! Know your limits. Take a snooze if you
need to, don't take your/someone else's life in your hands! Your family
will/should understand, and would like to keep you around! Don't make it so they
take all of our license's away because some of us take chances! Also don't fight
the Cataplexy attack unless you are in danger (driving or such) go with the
flow, learn how to fall to protect yourself. The more you resist the worse the
attack and the longer the spell. Don't try to get up right away either. Wait
till you're under complete control, everyone/everything else can wait. You will
feel better for it! Thank you! Kristy Heeter
The science guys are finding that people with
Narcolepsy have a protection against Type 1 diabetes but a correlation between
Narcolepsy and Insulin Resistance followed by Type 2 diabetes (if diabetes runs
in the family, if it doesn’t insulin resistance continues). If you get the
carbohydrate cravings or if you are a female and have cyst on your ovaries, you
might have insulin resistance. If you have problems losing weight no matter what
you eat, if you crash after eating a lot of carbohydrates, if you have problems
recovering after exercise or a busy day and feel weak and tired, these are
signs. PLEASE GET YOUR INSULIN LEVELS CHECKED, NOT YOUR SUGAR LEVEL! Starting a
simple medication like Metformin that will correct your insulin production can
help a lot! I started taking it in Dec and I’ve lost 42 pounds, my carbohydrate
cravings have stopped, and I’m much more active with less recovery time. Not
perfect, I don’t think I ever will be “normal” but getting the Narcolepsy better
and this insulin level better I’m probably 90% normal and 100% improvement over
being housebound!
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