Last of four paintings in the picture story of what we now know as Sleeping Beauty by sir Edward Burne-Jones,

The fateful slumber floats and flows
About the tangle of the rose.
But lo the fated hand and heart
To rend the slumberous curse apart.

The threat of war, the hope of peace
The Kingdom's peril and increase.
Sleep on, and bide the latter day
When fate shall take her chains away.

The maiden pleasance of the land
Knoweth no stir of voice or hand,
No cup the sleeping waters fill,
The restless shuttle lieth still.

Here lies the hoarded love the key
To all the treasure that shall be.
Come, fated hand, the gift to take
And smite the sleeping world awake.

William Morris, friend to Sir Edward and who wrote a stanza for each of the four paintings that depicted the story.

New meeting place!
9240 N Meridian St Suite 330
(middle office building on W side of st. turn on 93rd and park in back)
It's the American Sleep Medicine Office on 3rd floor.

2010 calendar

I have an multi-generational family vacation that spans 2 weekends.

Aug 14th, Oct 9th, Dec 11th

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 a 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."

The following is a good brief synopsis of what Narcolepsy is taken from Stanford Center of Narcolepsy.

(Things added by parenthesis or in blue or red are my additions or personal thoughts
red is something important or new. This motif follows most pages through the website.)

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. They are beginning to believe it is an auto-immune response. Several people have documented cases now of anaphylactic shock from insect reactions or illness, foreign matter such as tumor/cyst, or seizure or leision that immediately triggered full blown narcolepsy that was diagnosed quickly. It is also becoming apparent that we often have more than one auto-immune disorder. Insulin Resistance that turns into diabeties, fibromyalgia, MS, lupus etc... (read about auto-immune diseases in Narcolepsy Technical Stuff ).

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. 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 could be losing the receptors for the chemical, or the receptors could be becoming resistant to the chemical. Recently they've done a study which showed in at least some of the cases that they are indeed also losing the hypocretin but just not to the extent as those with low hypocretin levels. Read "Localized Loss of Hypocretin (Orexin) Cells in Narcolepsy Without Cataplexy" on the Narcolepsy Technical Stuff page. (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 or slice 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 had very mild symptoms till about age 9. See My Story for the rest. (I have since been told by the research coordinator that my level were indeed normal, so now i'm confused as to why they told me and my doctor they were high at first and Dr. Mignot even gave me the number 609 and said he remembered my file when we met because of the brain issues. Normal being in the 400's.

Oh well, I can't get a result of the test in writing so now i'll just have to be confused, am i high or normal? Was that normal normal or normal for narcolepsy being low? I was so in shock when it was changed on me I forgot to ask, LOL. And if i'm normal then why is my cataplexy the worst symptom? Most people in the 10% don't experience that as the primary symptom. Why am i different then? No matter what the cause we all suffer something to the hypocretin system. They have documented people with narcolepsy with all three levels and all three levels have had cataplexy [most of them being in the missing hypocretin catagory]. They can't seem to fit us all into tidy little boxes no matter how hard they try.) 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. As for the other 10% they are hoping to uncover the answers and treatments as education continues.

They are trying to push a development of a nasal inhilation system for development to temporarily replace our hypocretin much like insulin does for a diabetic but there is no money in it for the pharmaceutical comapanies so we are going to have to get a government subsidy. 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.

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.

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 flourescent 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!)

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.

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): http://www.esst.org/adds/ICSD.pdf (updated 2001 diagnostic coding manual by the American Academy of Sleep Medicine).

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.

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 on 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. Make sure they take you off the REM suppressant meds! That messed up all my tests! How do you pass a MSLT where you have to go into REM 3 out of 5 naps when you're on a REM suppressant medication? I went into 2! And the overnight showed 40%! Sheesh! My sleep latencies were less than 5, but the first doctor still labled me as IH (idiopathic hypersomulance because he let me take the paxil on the tests which suppressed my REM). So don't fudge! Wean off those meds like you're supposed to!

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. ( I have sleep delayed syndrome, A hereditary night owl issue which causes me to have problems falling asleep first thing at night even with my xyrem at times if i'm wide awake when i take it! It's a Circadian Rhythm Disorder (body clock) so a couple of tests over my many have picked this up. Either on trying to get to sleep or going to sleep quickly and then waking up for a long period before falling asleep again. It does seem fairly common, something i've heard over the years online and in the support group, especially when wired up to these machines for a test!)

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 (depending on the medication...talk to your doctor).] Also remove yourself from stimulants, even over the counter, or you may end up messing with the results (again, talk to your doctor, usually this is only a day or two before). 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. It takes 90 min to cycle into REM sleep for anyone other than someone with Narcolepsy. (Some people with severe uncontrolled sleep apnea can occasionally which is why they do the overnight to catch it. Severe sleep deprivation is the key to triggering the quick REM sleep. But as a habitual sleep onset, we're pretty unique.)

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.

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 don't know if it's just he nature of the disease or just the fact that the people that come to the support group are the one's that are the hardest hit? Over the years i've seen so many lose thier spouses, their jobs. It makes my heart break. This illness is so hard to deal with, i'm so fortunate to have a loving husband that figured things out. I'm fortunate to have made it through to get my disability. I don't want to be on disability. I've tried to get off of it by working a flexible job but it was too much for me. Because i didn't finish college i don't have the skills even though i have the brains. I don't have the stamina if i were to think of something i'd like to do i'd have to repay the old loans and the new. I'm content with my family the way it is, but it hurts when i see others suffering. Now that I'm on Xyrem , and my kids are both in school. I work part time for the school cafeteria, and I work on this web site as well as pecking away to restart 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 personally.

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! Most of us have warning signs that our bodies tell us when we are too sleepy and worn out to drive. Learn what yours are. I know how I feel and what I can do hour to hour, and what that day is going to be like when i wake up, just by how I feel when I wake up. How rested I feel, how coordinated I feel, how clear thinking. Some of us, even with medication, should not drive if you have problems falling 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! Remember, you have more of a chance for one to trigger the more sleepy and worn out you are, your threshold drops accordingly! 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. (My family always said we didn't have diabetes in the history. It was only that our insulin raised so slowly we died of old age and insulin resistant and fat before the pancreas burned out and triggered into diabetes). 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 JUST YOUR SUGAR LEVEL! Starting a simple medication like Metformin that will correct your insulin production can help a lot! I�ve lost 120 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 manageable and this insulin level brought under control I�m probably 90% normal when i stay rested and keep my normal schedule and 100% improvement over being housebound! Read my new page on Insulin Resistance

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Narcolepsy Information

& 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.

Narcolepsy Information & 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.

Narcolepsy Information

& Indiana Support Group