Narcolepsy Information & Indiana Support Group

(Idiopathic Hypersomnia too)

 Patients, Family, Friends, all welcome!

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 and Vitamin Deficiencies.

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

"The Rose Bower"

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.

Indianapolis Support Group

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. 

2011 Calendar

April 9th, June 11th

Aug 13th, Oct 8th, Dec 10th

Second saturday of every EVEN month from 3-5PM

Next year's annual conference is Las Vegas

at the Stratosphere

All day Fri Sep 16-Sun 18th

more details to come!

  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. 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. We are getting more people diagnosed as the education and awareness of the disease spreads. They now believe as many as 1 in 1,000 have Narcolepsy and are seeing a lot more children and teenagers get quick diagnosis after the auto-immune trigger. This leads to better control of symptoms and lifestyle!

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

EPIDEMIOLOGY

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 have pretty much established 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.  They have enough research to conclude that in most cases the onset is precluded by a virus such as strep.  See the abstract "Elevated anti-streptococcal antibodies in patients with recent narcolepsy onset" on my Narcolepsy Technical Stuff  page. I am also urging them to look into Magnesium and Potassium intercellular deficiencies within the population. With the high prevalence of Insulin resistance and pain disorders as well as the research that indicated physically induced cataplexy shortly after cessation of activity, it is my opinion that people with Narcolepsy have a mild intercellular imbalance of magnesium and potassium that would not show as depleted in blood plasma levels. They are learning a lot about Magnesium conversion and other intercellular problems causing and then therefore helping to treat many auto-immune disorders. In most cases it is a genetic weakness and wasting of the vitamin through improper absorption. All of the research that has lead me to this conclusion is listed on the Narcolepsy Technical Stuff  Page.

( It is also becoming apparent that we often have more than one auto-immune disorder.  Insulin Resistance that turns into diabeties, fibromyalgia,  (read about auto-immune diseases in Narcolepsy Technical Stuff ). They have published articles that indicate the hypocretin system is involved in pain sensation to some extent which explains why so many of us have secondary pain disorders! (Which can also be vitamin deficiencies). You can read the abstract about that on the same page. I'm sure we will learn more as time goes on. The good news is that although we are prone to auto immune disorders in clumps we seem to be protected from cancer. Like i stated above the whole cluster of secondary auto-immune illnesses that are associated with Narcolepsy have been researched to be caused by potassium and magnesium deficiencies. Following the pattern of other illnesses with K and Mg def (like Gitelman's syndrome which can be completely intercellular and difficult to diagnose and yet need vitamin supplements every 4 hours to maintain intercellular balance) they take weeks to recover after an illness which co-insides with the presentation of symptoms after the "strep infection" that they have found to be as the primary trigger for Narcolepsy.

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).  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.  Dr. Mignot even gave me the number 609 and said he remembered my file when we met because of the brain issues. Normal is 180-320.  Also both the other person and I have had brain damage.  Mine is only possible damage, I was born with a dermoid 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 because there is no ceiling for hypocretin levels within the normal N free population if they have been sleep deprived.  I may have an answer to some of my confused high levels when tested and although there are several "possibilities" for high levels including receptor damage. With the diagnosis of My Gitelman's Syndrome (K,Mg, and Na deficiency) as well as being on the provigial (which caused me to have central sleep apnea because it dropped my estrogen so low i was not having normal monthlies (low estrogen interferres with sleep quality and causes insomnia) ). This would have made me VERY sleep deprived and physically drained. I have always stated i have less C after resting, and now i know it's the combination of the two. This would make my hypocretin normally in the the normal range and augmented with sleep deprivation and physical activity. I do still believe that receptor loss or sensitivity issues would aggrivate C with physical activity because your hypocretin levels would rise. See C-Fos study on  Narcolepsy Technical Stuff  page. I believe hypocretin works on a bell curve.

My long "naps" in the afternoons where i'm apathetic and in and out of C and REM sleep and just lying there listening to the world go by, is really extreme Mg and K loss (and probably hypocretin elevated) which is then triggering the C. However, people with Gitelman's DO NOT have C or other sleepy symptoms like AB,HH,SP or REM Sleep onset, so i can rest assured i do have both! I believe the Mg and K loss is an overlap between them. People with N have a mild loss of Mg and K and people with Gitelman's have severe losses of Mg,K,Na, and a lot of times others like Ca, zinc, vit B and D. In the last few years in my support group i have been seeing a lot of other PWN also having other vit def, some get caught on plasma tests and others people are supplementing OTC. I don't think it's a coincidence. I think it is an area we have not addressed and why so many people feel that their N is progressive.

I truely am very unique and i'm not sure if it's a blessing where i can help them understand or just a curse! Most people in the 10% normal hypocretin don't experience Cataplexy as the primary symptom, especially not to the severity as mine. 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 have found an association with Idiopathic Hypersomnia and a chemical in the spinal fluid that acts like Valium. It's overproduced which causes them to be sleepy during the day. They are currently doing FDA trials with two medications to control this "valium" chemical so these people can have an effective treatment. Here are the links! http://clinicaltrials.gov/ct2/show/NCT01183312 and http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01146600

I also believe that some people with IH and N w/o C have been missdiagnosed and really have a vitamin deficiency. I have talked to a few people over the years that have had this happen. Please read about vitamin deficiencies and Gitelman's syndrome on the  Narcolepsy Technical Stuff  page.

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.

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 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!)

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): http://www.esst.org/adds/ICSD.pdf  starting on page 38.  (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(going to sleep)/Hypnopomic (waking from sleep)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 ...

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%REM sleep! 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!

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! Makes you look like a barbie doll that has started to lose her hair in clumps lol.]  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).  In the morning 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. 

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 don't know if it's just  the 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. The combination of Narcolepsy and Gitelman's syndrome is overwhelming and i have had to even quit my part time job.  I'm content with my family the way it is, but it hurts when i see others suffering.  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 and Vitamin Deficiencies 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 (ok, well i have to put in here now it's not going to solve the problem, you still have N and sleepy issues to deal with, but i was so tired of hearing people use vitamin's as a cure all i never looked at them properly. As i stated above i think we have a mild Mg and K def and i've seen quite a few others come through the group that have had other vit issues. Please research each one. Take care with how much on the fat soluable ones, but know that you may need more than what the regular daily allowance tells you. You may have to fight to find a doctor than understands intercellular deficiencies to get a prescription for something higher so they can do blood tests to make sure you don't over do.)  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

Insulin Resistance /Diabetes

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 (ok since my hysterectemy and issues with meds and balancing fatigue at work i've gained some back but i'm working on it!), 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