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| Bschlabra | MGS419 | Linda | Chastity | Jack |
I have just read about 30
stories in your sight, and i could relate something in every one.
I am a 54 year old diabetic female. After several years of every
kind of test, finally my dr said he was sure i had narcolepsy. At
first they thought it was a sleep disorder and they gave me a
c-pap machine. I hated it big time but i used it every night, all
night, because i thought that this was going to change my life
back to normal again. One week, nothing happenen, give it more
time, two weeks, still nothing and on and on for two months. I
was so upset because i thought this was going to be the thing
that worked. Back to square one, more sleep studies, another dr.
that just thought i was a fat, lazy old lady with nothing better
to do than complain.fFinally, my primary care dr. said
narlolepsy. I am only his second patient to have it and she just
found out as well. she is only 16 years old and has fewer
problems with hers than i do and responding to provigil really
well. The first week i was on provigil, i thought i had been
given a second chance at life. For the first time in years, I was
awake and my head was clear.I'm sorry to say that only lasted
about three months. Then we doubled the provigil and that helped
a little. Now it is working better than nothing, but i still have
a really hard time making it thru the day. My biggest problem is
not falling asleep, but what i call zoning out. In the middle of
a conversation, i just start talking about something completely
different. It is really causing me a problem at work. If i am
writing something, and i go into my zone, my handwriting
completely changes from readable to gobbledy goop.I also zone
while driving the car and therefore have almost quit driving
except close to home. I also suffer from cataplexy,
paranoia,(I think people are standing behind me all the time) and
the one that make no sense, insomnia! Go figger. I too have
always had very vivid dreams and when i fall asleep for just a
few seconds, i dream. Sometimes when i zone, i dream as well even
tho my eyes are wide open. I do feel at times that i
I am loosing my mind. My family and friends try to understand,
but I dont think anybody who does not live with it can. Im not
sure how much longer I will continue to work. Up until now I can
usually cover up my screw-ups from when i zone, but it is getting
harder and harder. One day this week, i counted the same stack of
money nine times, because i kept going into my zone. I would
really like to hear from anyone else that has these specific
problems. Also, the provigil has caused me to have major stomach
problems. Many days I just dont eat because when I do, I get so
sick and have severe pains. I have not even addressed with my
doctor, at this time it seems to be the lesser of the evils. But
it does seem to be getting worse and worse. Thanks for the
opportunity to share a little of my life with people who
understand. I look forward to hearing from some of them.
Bschlabra@aol.com
Melody,
I might have e-mailed you before. My daughter has just
turned 18 and has narcolepsy. She will be attending college
in the fall. She was going to go to a large
university, but at orientation she was so busy that there
wasn't even time to take a nap or even eat lunch. The dorm
rooms that the orientation students stayed in were very far from
where the kids were meeting during the middle of the day.
She found out that she still could attend another smaller college
this fall. She'd been accepted previously. When we
visited the campus, everything was close, the professors and
staff were readily available, and she wasn't exhausted getting
around. In fact, the student activities center lets
the "regular" kids flop in the comfy chairs and sofas
for naps at any time, and it is safe. She wouldn't be
embarrassed if she couldn't make it to her dorm room to nap!
I read your discussion with the "fellow" person
with narcolepsy. I think that the person must be in
denial, or at least have symptoms that are much less severe
than my daughter's symptoms. Until my daughter's
experience, I had NO IDEA how debilitating the EDS part of
narcolepsy could be. I just thought they just needed a few
more Z's during the day. I've witnessed my daughter's
sleep paralysis, and it is not a pretty picture. Either is
watching her go in and out of a half-asleep fog, or having
reactions to the various medications.
We found that the stimulant medication helped her a lot while it
was in her system, but as soon as it started wearing
off, she'd sleep and sleep. She'd be so sleepy she'd
forget to set her alarm. It was worse than her sleep times
without medication. She seems to like provigil, but it
doesn't seem to work consistently.
She really doesn't have much in the way of cateplexy, but she has
mild muscle weakness and has had a few fainting
"spells". The muscle weakness is more frequent
than her "spells' but it doesn't really get in the way of
her regular functioning.
She'd like to be awake and alert more hours of the day.
She'd be happy with 10 hours a day that she could count on!
I wonder how many people with narcolepsy don't have bad
EDS. Are there PWN's that just doze for a little bit just
once in a while, like we see on TV? I could see that
a little bit of stimulant meds would do the trick.
Maybe that is what is going on with the "fellow"
PWN.
I know that my daughter is motivated, intelligent, and a very
interesting and interested person when she is awake and
alert. She loves life when she is available to experience
it. She savors every moment, because she isn't sure
when the next time will come together for her.
Yesterday, I found out that my aunt, who is about 77, had
Parkinson's Disease. Do you know if there is any
correlation between Parkinson's and Narcolepsy?
Thanks.
LYnn
lynvm@carolina.rr.com
I was diagnosed with Narcolepsy and Cataplexy about 3 years ago now. I thought it might be fun to share a cataplectic story with you . Some sufferers may find this a bit sick but I have found that if I don't laugh about this awful illness then it will beat me in the end, so this is my way of getting one over on it. I am a serving police officer in The Metropolitan Police Service in London. A few summers before I was diagnosed I was attached to a squad who were targeting a known drug dealer in the area. several weeks of observations had taken place at an address and the time had arrived to " pay him a visit ". Four of us were to sneak to the front door and I was to smash it open with a very large sledge hammer. The rest of the team would then appear and storm the house. It has been emphasised that speed and surprise were the crucial factors. We had crept " cat like " to the door which was an unusually large one. All eyes were on me as I lifted the sledge hammer above my head to give it a real good swing. Just as it was about to be swung down at the door one of my colleagues said " don't miss " which to the others wasn't the slightest bit funny, however to me it seemed to hit a spot and of IT started to happen. My head started to flop forward and my legs were starting to give way. In the privacy of my own home I would have fell to the floor giggled for a bit then get back up but this was different . I had several other officers looking at me , I was on a drugs raid and I had a 14 pound hammer above my head. I was doing all I could to think bad thoughts but even they seemed funny and so my arms and legs were now ready to collapse on me. In a last effort to stay upright I took a few steps forward which then took me a few backwards and with the weight of the hammer above my head I started to stagger from side to side. My mouth was now hanging open and I was making my usual weird moaning noises. I knew now that I was in trouble and beyond the point of return. I staggered towards the door, now on the verge of collapse, with the others running in all directions to avoid a fatal head injury. I collapsed to my knees with the hammer smashing into the floor about 12" short of the woodwork. I lay on the floor unable to move or speak. My colleagues were all laughing hysterically which of made things ten times worse for me and pushed me to the verge of blackout. Nothing was said about the incident as it gave everyone a good laugh at my expense, it was put down to a fit of the giggles. If anyone finds this one funny I have a list of others which will give you a different insight into Police work. Scott
hanscot@lineone.net
Melody, I just found your
website and I want to thank you for it. I haven't been able to
read all of it, but I've found it to be very helpful and
encouraging.
I've been diagnosed with narcolepsy and have been on Provigil for
about a week. I was having very bad side effects in terms of
feeling like my head was full of helium (as opposed to
characterizing it as a headache, which it was not), insomnia and
some anxiety. I called my doctor and was advised to take only the
morning dose of Provigil, rather than a morning and noon time
dose. Things seem to be moderating, but I wonder if the long-term
outlook for Provigil is perhaps not that promising for me.
My questions are these: Can anyone tell me their experiences with
Provigil? If you experienced side effects, did they go away? How
long did it take for the side effects to subside? I will continue
to take the Provigil because I see no other treatment option. If
this doesn't work then I will have to proceed without drug
therapy.
Thanks again for your help. Anyone who chooses to respond can
e-mail me at: Thorny911@aol.com
Thanks,
Rick
I HAVE A PROBLEM STAYING AWAKE DURING THE DAY. IT REALLY MAKES ME WONDER WHY I FEEL SO ZOMBIE LIKE EVERY DAY. I HATE TO FACE ANOTHER DAY BECAUSE SO MUCH TIME AND EFFORT TO FUNCTION. COFFEE DOES NOT CUT IT BESIDES TOO MUCH WILL MAKE YOU SICK. SO WHATS LEFT SLEEP ALL DAY OR ASK FOR HELP. I ASKED FOR HELP. THE ONLY PROBLEM I HAD WAS THE DR. KNEW NOTHING ABOUT NARCOLEPSY I HAD TO FIGHT TOOTH AND NAIL TO GET TREATMENT. I ALSO HAVE TO DO MY OWN RESEARCH TO TAKE THE INFORMATION BACK TO MY DR. ITS SO DUMB BUT THATS MY STORY.
mgs419@aol.com
Hello!
My name is Alex and I have recently been
diagnosed with narcolepsy. I am and have been a Open-Heart
Critical Care RN for the past 8 years. Last week I was told that
I am under no circumstances to operate a motor vehicle until
cleared by my MD. This whole situation has caught me off
guard and ill prepared to change from a well paid highly skilled
heart nurse to Mr. Sandman. I have always had a terrible sense of
humor (lets say macabre) and I hope it will continue to serve me
well, I'm afraid I'll need it! I was having a heck of a
time staying awake and was indeed falling asleep at work at the
oddest of times. I figured it was the long shifts, hi-stress
environ taking its toll on me. I'd fall asleep talking to the
MDs, standing at the bedside, quite often while driving 40 miles
to & from work. I talked to my MD cronies I work with &
asked who to see and I was hooked up with a pulmonologist I
happened to know very well & liked. Blah blah blah... off to
the Sleep/Wake Center fo an overnite stay and the days following
series of naps.
I thought I did well
and the tests would come back negative. Wrong - ruled in for
severe narcolepsy, mild sleep apnea and restless leg syndrome.
Now I am out of work, unable to drive and feeling a bit sick from
Provigil. I am still in denile and being a RN I know I should
know better but what to do? I am married with a beautiful little
boy and a wife with her own health troubles and I am the
breadwinner. Those of you living with narcolepsy know how bizarre
and unreal this whole thing is. I have had some minor cataplexy,
unfortuntely I was behind the wheel at the times it occurred.
Now I am at a loss as
to what to do next and feel assured that in a couple of weeks I
will be able to return to the ICU to do the work I do. I think.
Time will tell and I hope my sense of humor holds out. This web
site and the candor of the notes people have offered up give me
hope that I will keep on smiling but that I have a long road
ahead of me. Thank you for this opportunity to vent and for
providing this forum.
MtymtyDiTar@aol.com
Where to start? Our son, now
13, was recently diagnosed with narcolepsy after being
misdiagnosed as ADHD, and later as suffering from depression.
While knowing what the real problem has been helps, this is only
the tip of our family of five's iceberg. As near as we can tell,
my husband has also been suffering from narcolepsy, compounded by
sleep apnea, for about 12 out of the 15 years we have been
togethor.
Throughout these years I have loved, encouraged, listened and
tried to understand what has truly been going on with both my
husband and my son. Patience is not always a virtue, and all the
Love and Understanding in the world can't help them feel better.
I sometimes feel I should have pushed harder for medical help
when I knew so well that something was wrong, but as I learn more
about narcolepsy I can see that pushing probably wouldn't have
made much difference in the long run. I trusted those in the
medical field to know whereof they spoke, but see all too clearly
now how easy it is to misunderstand this condition.
I cannot fully understand what my loved ones are living with, any
more than I could understand it if they had, say, MS, but I am
trying. This is all so new to us and it has been going on for so
very long now. The school has not been exceptionally helpful
either. I am often emotionally exhausted, unable to sleep, one
step away from tears, and just plain angry. I don't know how it
has been for anyone else whose life is entwined with those who
suffer from narcolepsy, but it affects every aspect of our lives
togethor. It hurts to love so much and be unable to help. It
hurts all of us. Finally, I can say that there is a light at the
end of this tunnel and for the first time in a long time, I'm no
longer afraid that it is just another train.
Thank you for sharing your light with those still in darkness.
Quinn
ShadowtwinChaos@aol.com
Hi Melody, It's real nice to
see a website like this. My name is Jenna. I'm 26 and have
narcolepsy. I started having symptoms back in 98. I started
falling asleep uncontrolalbly. I was able to go to a nuerologist
in the spring of 2000. I went through both the sleep apnea and
narc test. I am able to have a full vivid dream within the first
30 sec. of falling asleep. I've never experienced the
hullucinations. I do have the cataplaxy. Every time I get excited
about something or I laugh to much I loose all muscle control in
my knees and I get very lightheaded. I am in the process of
trying to find out all the information I can on the disorder. I
was told by my nuerologist that it is a hereditary thing. Well I.
talked to people on both sides of the family and there are no
known cases of narcolepsy. If you do have any info on other way
narcolepsy can come about I would realy like to hear back.
Without anything to keep me awake during the day I usualy wake up
in the morning and within the first three or four hours of being
awake I end up passing out. I can sleep anywhere from twenty min.
to three or four hours. I then wake up with a headache or am
extremly dizzy to the point where I have to close my eyes again.
I can stay awake for maybe two hours at a time inbetween fits. I
was perscribed Providgil. My narcolepsy is bad enough that the
dr. had to go 100 mg. above the recemended highest dosage. He
told me that the pharmicist recomends not to exceed 300 mg. a
day. My meds cost 250 dollars a month. I can not afford to pay
for them so I have to find alternate ways of staying awake. I
take an over the counter med that is for asthma patients. It is
called ephedrine. The only problem is the side effects. I get the
shakes real bad and it makes my heart race. This drug can also
cause you to have a heart attack. I am in the process of also
finding out a way to be able to get my med. I realy don't like
living this way. It's driving me nuts. You can put this on your
website if you would like. I do hope to hear from you soon. It
would be great to finaly be able to talk to someone who
understands what it is like to live in and out of sleep all the
time.
My email address is
babsjlb16@netscape.net
Thanx for listening,
Jenna
Dear Melody, I'm a 40 year old homeschooling mother of three who hasn't had time to be an internet whiz. Oh, My dear ones, I'm so sorry! You see, almost 10 years ago I found a near cure for my narcolepsy! I just assumed that all of you other precious people out there had gotten word. After reading this site, I'm obviously so wrong. I feel like I've been hoarding the greatest secret. Now, that I'm finally with the new Millenium, please help me get this word out. Here it is. I got help through homeopathic medicine. I take an all natural (absolutely no side effect) remedy called Phosphorous. My life is completely different after having lived for at least 10 or 12 years of terrible narcolepsy. I could go on and on about my prior symptoms, but you can already guess them. I slept at school, slept at work, slept at stop lights. You know the routine. And it never mattered how much sleep I had the night before. My dream life was an adventure that started the second I hit the pillow and it felt it lasted all night long. I never woke up refreshed. With my sleep cycles all out of whack, it's no wonder I was tired all the time. I've also had the thing where my brain wakes up but not my body. Very frightening. As for now, I have to take my remedy about once every 4-5 months. It only costs about $5 a year. (If that). I know the remedy is wearing off and I need to take it again when I start to get sleepy regularly when driving, sleeping, sitting in church etc. or my dream gets out of control again. When the remedy has really kicked into high gear, I don't even need naps. I would say I feel 98% cured of narcolepsy. I still fall asleep easily at night and dream more than most people. As the Phosphorous wears off, I cat nap about 10 minutes a day which is very livable. Otherwise, I never fall asleep driving, I never fall asleep reading. It's a whole other world. I'm even a morning person!!!!!! I get up at 6:30 AM ready to wake up. I sometimes wake up without an alarm. At a seminar or church, I find myself hunting for the sleepers wanting to share with them what I now know. Interstingly, every person who I have sent to a professional homeopathic doctor, has required the same remedy. Phosphorous. It may be that some would need a different remedy. But, there's definitely a connection here. Over the years, I have had to increase the dosage amount from a 200 c to a 1M. If you know nothing of this medicine, this will make no sense to you. But a homeopathic doctor will know exactly what it means. You've got to look into it. Please forgive me for not getting on here ten years ago. The testimonials on your site made me want to cry. HELLO OUT THERE, THERE IS HOPE, THERE IS A BETTER WAY TO LIVE WITHOUT ALL THE DRUGS AND SIDE EFFECTS OF THOSE. Melody, please get back with me and tell me where to start. I'm authoring a children's history book at the present, so I'm not able to correspond or write others on any regular basis. But, help me get my one time testimonial out. I don't want it to be this one. (I'm a professional, I can do better, this is all off the top of my head) I don't even know you but our life experiences have given us a bond. I look so forward to hearing from you soon. With eyes wide open Linda
lindahobar@cinci.rr.com
I'm still sorta in shock that I can log on and actually talk to and read stories about people that are experiencing the same things I do. You understand. It makes me feel like crying. You know that it's very difficult to deliver the punchline to a joke without it coming out disjointed, with a pause in it because your jaw isn't working and your eyes have closed, or you're embarassed because it could come out slurred. You know that feeling....that awful feeling when you're driving a car and you start fidgeting and turning on the air conditioner, or turning up the radio....I once had to drive 50miles to a hospital to take my 6month old daughter at 3am in the morning, my husband sleeping in the passenger seat because he had to go to work the next morning oblivious of me singing the entire song "100 bottles of beer on the wall" from 100 down to zero just to keep from running off the road (before being diagnosed of course, I would never do something so reckless now that I know). You have the headaches, hot flashes, disorientation, grouchiness of being interrupted during a good nap, lack of energy.....such lethargy that people around you begin to call you lazy...."oh don't worry, if you got up off your lazy butt you wouldn't be so sleepy"..."if you went to bed earlier/later you wouldn't be so sleepy"...."everyone gets tired, just get up and make yourself do it"....and the one I'll never forget as long as I live, "young lady, what's the matter with you, are you on drugs or something? Are you? You'd better answer your mother young lady or you're grounded! Where did you get the money for drugs? Are you drunk?" At the time my mom said that I was a senior in High School. I had never tasted even a wine cooler, much less got drunk in the middle of the afternoon at age 16. Never hung around the "druggie" crowd so didn't have access to buy drugs even if I could afford or even want to....So I thought I was lazy. You understand. You know the horrible feeling....you laid down to go to sleep at 11:45pm...you bolt upright in bed, your heart pounding, you could have sworn someone had walked in the room, sat down on the bed (you felt it dip next to you) and put their hand on your leg (you felt the pressure of their hand)...you could have sworn they were there...but you're sitting up in bed terrified...and it's now 11:52pm. You lean over and try to snuggle with your spouse, nudging them awake to get some comfort and a bit of selfish sympathy...but they are grouchy and don't like being woken up, they say "it's just a dream, lighten up". It was more than a dream, it was SO real. So scary. You remember just a brief second before really waking, you tried to lift your arm....it was so heavy you can't move it...or your head...or legs. How many times have you been online reading something at 10pm and all of a sudden you realize your eyes are closed....you open them and it's now 11:30pm. You seemed to have read several pages because you turned the page, but can't remember what you just read. You can drive a car home from work in a fog and it hits you when you get out..."how did I get home? did I stop at every red light? did I obey the speed limit?" Or typing someone an e-mail and you suddenly can't stay awake. You send your friend a message telling them you're tired and goodnight and it comes out something like "so there was and tired. tomorrow maybe night." Automatically typing but not concious of what you are doing. I don't know anyone personally in my life with Narcolepsy so I feel so very alone. People are fascinated when they find out and a bit worried. Others can only comprehend if I compare myself with the "Duce Bigalow", "The Rat Race", or "The Sopranos" characters. But I am very fortunate that my sleep attacks are nowhere near that severe. I do have both marker genes for Narcolepsy and I have all 4 major symptoms but to a less severe degree. My cataplexy lasts a brief second and I don't loose consciousness or fall down. My head drops back a bit, my eyes close, my jaw drops, I could possibly drop what's in my hands and my knees buckle a bit. I will most definitely fall asleep at any place and time if it is warm and quiet. I've even fallen asleep standing up in Church while everyone is praying...good thing my husband was there to catch me or I would have really been embarassed. I had to quit College because I couldn't stay awake in class. I usually won't fall asleep if I am having a conversation with someone or doing my job at work. I am active enough and it's not so monotonous but I do have my bad days where I have to stand up and walk around a bit while doing my job. I hear the usual..."why don't you go get a coke or get a drink and it will refresh you"... but those people aren't too happy with my response "thanks but that won't really do any good and caffene will just make it worse"...I think the worst thing (besides the decimated metabolism) is that feeling. The anxious, fidgety, overwhelmingly depressing feeling that it's about to happen and I won't be able to stop it. When driving I usually have to chant "just a few more minutes...just a few more minutes..." to get myself to the next offramp or home. I hate being so tired. I had Narcolepsy for 12 years before I was diagnosed 4years ago. My metabolism problems started 10years ago and I gained over 100lbs in just a couple years. Of course every doctor in the tri-state area had a different diagnosis for me..."possible diabetes, possible epilepsy, thyroid problems, lack of exercise...go on a bean diet, the nutrition triangle, the grapefruit diet, slimfast, Jenny Craig, Weight Watchers, Nutri Systems and on and on and on and on" personally my least favorite was the nutritionist that had me keep a food diary and write down everything I ate then at the end of two weeks I would go in, weigh and we'd discuss what I did right and wrong.....this person actually said "you are going to have to make an effort for this to work, you have to write EVERYTHING down you eat, not edit it to what you think you should list, if you are going to lie like this all the time this diet wont work, no one can eat this little and be so big" I have yet to find a diet that works with my messed up metabolism, one that replaces what I have lost chemically....but I do have one thing to say about prescription help....... PROVIGIL IS A MIRACLE DRUG. I can't say enough good things about it. I tried other drugs but this one doesnt make me have the "buzz" feeling of just taking the drug or the "downer" of coming off the drug. I feel normal....not sleepy. Miracle Drug. Well, I'm so glad to have found this site. I'm getting a bit sleepy from typing so much and I don't want to embarass myself by typing someting I won't remember typing later. I never had anyone to talk to that knew what it was like. Sure, my family and friends are sympathetic and supportive but no one really understands. You do though. Thanks for letting me talk. I appreciate it alot.
DDLover@aol.com
Hi Melody! :) I just found your site tonight, and am not done yet. I can see that I'll be visiting again. :) Thank you for providing such an informative site on Narcolepsy, and for you & other's sharing experiences. I've been diagnosed with Chronic Fatigue Syndrome for the last 5 years now, but am also being tested for Narcolepsy. I believe this may have been my illness since as far back as I can remember. I've had vividly real dreams my whole life, but they didn't start getting "creepy" until about 9 years ago. It creeps me out to read other's story's of someone sitting down next to them on their bed/couch. I had many of those, and of couse could (not now) relate a fully detailed one of a little boy tugging at me, talking to me, and totally bug the heck out of me, because I was darn tired (asleep), and I knew deep down, that since I lived alone, there was no way there could be a kid or anyone for that matter tugging at my arm. So, when I finally do wake up from these "nightmares" I'm like everyone else, and turn on every single light in the place, and make phone calls, even to the operator in the middle of the night, just for a reality check. I make a habit of writing my dreams down, and have shown them to doctors throughout the years. Although I didn't think I was hoing crazy in "real" (awake) life, I felt my dreams were making me crazy. When I had my miscarriage, I had some very BAD dreams, of things I have no idea from they "ideas" came from--don't know how anyone could even imagine. Was diagnosed with Post Traumatic Stress Syndrome, but the thing was, again, in "awake" life, I was rather okay. But the "dreams" during my sleep were what was affecting my daytime "awakeness". My psychiatrist had me try many different medicines to stop these 'dreams", but none helped, and some worsened it. So, I just had to learn how to deal with these types of dreams, and get past the worst of it. It did kind of get over the dreams related to my miscarriage, but there are times/things that still set them off. I still get "visitor" dreams, and as much as i try to "deal" with it, they still freak the heck out of me. I don't think these types of dreams will ever go away. To me, these are far more worse that the dreams I swear I'm in the shower getting ready for whatever, only to hear the alarm go off, and still realize I'm in bed. But, I suppose they are not as bad as when I swear I'm driving in my car, making turns, stopping at lights, only to "wake up" and fins myself within inches of a guardrail or worse. Not to mention, I hope my sweetie doesn't realize I fall asleep during sex (even if for only 30 seconds). Forgive my terms, as I'm not aware of them all, and bad with remembering. But, I've always had problems with falling asleep suddenly and at unexpected times, more so in the last 9 years again. But, in the last 12 years or so, I developed what I think you call, cataplexy. When I am scared or super angry, my whole body locks up and I shake like a convulsion and need to sit down right away. Even while sitting, I will continue to shake severely, until whatever brought it on is gone. I become completely weak, like jelly. I always fear that if ever faced with something severe, like being held up or something, I wouldn't be able to defend myself at all. I had trained to be a cop, and actually got certified as one, but that was the beginning of these "episodes"--sleep & "jellyfishness". I had one problem while on duty, it wasn't a harmful situation, but not something an officer should be showing when faced with confrontation. I was so humiliated & embarrassed, that I quit, and dropped out of site with no explanation. My sleep problems (falling asleep) had gotton much worse...I couldn't even manage driving 10 minutes even after a whole night's sleep. It's improved some now (I take Provigil), but I still don't drive much anymore. When I have to, I stop at the first sign of sleepiness---granted most of the time there is no warning, so driving just isn't safe for me. Unfortunately, until I'm diagnosed, I can't hardly explain this to other's so that they understand and are more helpful when it comes to taking me places. So, I find I have to stop places and take a nap. Sometimes my naps last 4-5 hours and longer. That bites! But, I guess, regardless of what I "have" or don't have, I hope they figure it out soon.
Sorry, I didn't mean to babble so much. I just kind of wanted to share my story with you, and thank you for your website. I did also want to comment on your posted experience on some website forum. Besides the fact I think i know which one it is (and it doesn't matter), you were not in the wrong at all. Many people that go to a particular forum, may or may not have, in this case, narcolepsy. Liekwise, they may not be diagnosed (like me). Now, most people undiagnosed will usually admit that, but some don't. I would suspect that "fellow" didn't really have narcolepsy, because if she did, she would understand as you pointed out, they everyone is effected differently. But, more importantly, if she had narcolepsy to any degree, she would be more supporting, and at least careful what image of Narcolepsy she is portraying in her posts. Whatever illness a person has, especially if it goes by the same name, I would think most people would be respecting of it, regardless if we "like" the disease we have. I think you ran into a bad egg. "Fellow" may have been near that forum, just to squabble, to create trouble, as many do. Some people post, and try to solve all our problems with a cure-all. Please don't allow "fellow" and other's like her to stress you out. It's better to try and ignore them. I understand the need to defend Narcolepsy, as you tried to do, and teach others that might see her posting, but if you ignore it, and no one answers her, newcommers will not pay her any attention. If anything, when you see something as ignorant as her posting, just create a new post, stating some facts or something. Then, if "she" chooses to comment rudely, you can still ignore it, but it will show everyone what a jerk she is. Whatever forum that was on, I hope you still peek in there every once in a while. I've been peeking in on one every now & again, but it's so inactive, I've been venturing out...and that's how I found your site..thank you, Melody! :) Kim
Hi my name is Cathy.from Glasgow Scotland.I am 52yrs old and was diagnosed with narcolepsy,cataplexy,sleep paralysis and weird dreams.only two months ago.I first went to the doctor about my sleepiness back in the early 70ties.I told the doctor that I was falling asleep at the cinema,when I was out with friends etc and he told me that I was lucky to be able to fall asleep like that,you are so relaxed and obviously don't have any problems he said.Over the years I was back and forward seeing different doctors some said it was my lifestyle,I was working to hard or it was a side affect of my medication which I was taking for arthritis.Last year I was drawn to an article in a woman's magazine about a woman who was always falling asleep and was diagnosed with narcolepsy.I went onto the web and found out not only did I have narcoleptic symptoms but also the cataplexy. Falling down.Whenever I said something funny which caused others to laugh my legs would buckle under me,now-a-days my head falls,if my hand is up covering my mouth, as you do when you laugh, it also falls down. Sometimes I am on the floor,thank God it has only happened when I have been in the company of family or good friends.The sleep paralysis is very freighting,even after all these years,it can happen when I've fallen asleep on the chair,I can see and hear everything that's going on but I cannot move a muscle.In bed I sometimes feel as if there is someone pushing me down into the mattress,it's scary stuff . Other times I can wake up from a dream and go on to finish the conversation I was having in the dream,with the people who are in the room with me,I can tell by the look on their faces what's happened and so I change the conversation.I saw a new doctor early this year she referred me to an neurologist who has proscribed provigil. Which I have been taking for the last few months.I still feel tired on and off during the day,but so far I have not fell asleep.I still have my cataplexy,sleep paralysis and fantastic dreams.I go back to the neurologist in June.So we will see what happens then.In the past I have fell asleep at the hairdressers,at church,at the bingo.and while I was in my car waiting for the traffic lights to change.If any of you think you have the same symptoms,keep on at you doctor and ask to see some one who specialises in sleep disorders. don't give up.
robert.shields2@ntlworld.com
I first want to tell you I think you website is awesome. I have narcolepsy, and it is comforting to be able to read about other people's experiences. You can post my story if you want.
I am 23 years old and have had narcolepsy since around age 12. I was diagnosed when I was 17. After years of medical tests, my mother mentioned to my doctor that I kicked in my sleep, and the rest is history.
I take dexedrine for my sleepiness. I have all the symptoms of narcolepsy, but I only take dexedrine. I wonder if it is enough, but I have trouble sleeping at night. Narcolepsy has had a huge impact on my life. I didn't even attempt to drive until I was 19. I am extremely shy and not as outgoing as I should be. Narcolepsy is tough. I have a hard time concentrating when reading, and when I was in college sitting through lectures was almost unbearable.
There is hope I guess. I try to have an optimistic outlook. Some people never get diagnosed. I can't imagine what I would do without medication. Actually I can, I would sleep more!
Chastity
Trirobson@wmconnect.com
Hi Melody, great site! My name is Sahra and I am 14 years old, and I was diagnosed with narcolepsy last week. I decided that it's best to educate yourself as much as possible about the condition so that you feel that you're not alone, and other people have the same things to cope with as you do. About a year ago from now, I started feeling so lazy and I was always in an 'I can't be bothered' mood-I felt useless. My friends and family were all saying to me to get my act together, grow up, and real mean stuff, but I knew that somthing was wrong with me, as I have always been a bad sleeper, experiencing frequent falling dreams, waking up shocked. I looked up 'sleep problems' on google.com and up came 'narcolepsy'. I clicked on it, and thought nothing of anything it said-I wasn't falling asleep at strange times! That was until the next few months later-I was talking on the phone to my grandma and my mum told me that I fell asleep in the middle, and woke up a minute later...I wasn't even tired though, I thought-then that site came to my head. I told my mum and she didn't believe me until I asked her if she remembered the vivid dreams that I used to have all of the time when I was little. I cope with things better now, I am on tablets that keep me awake but I have to make do with frequent naps at school which is quite annoying because I miss some lessons...(!) Basically what I'm saying is get the problem sorted. Many people put up with alot of things before they find out what's wrong with them. Keep the fight up, and you will get it sorted!
groovyhunny@msn.com
My name is Michelle and I have
narcolepsy much similar to melody. My mother said I was the only
baby that came home from the hospital and slept through the
night. I would often have to take naps as a child and even was
found sleeping standing up!! It was found to be harmless an
actual blessing according to my mother because I never put up
fuss to go to sleep or take a nap! It wasnt till I was a teenager
that I began to experience overwhelming sleepiness in class at
school and slight buckling of knees when I would laugh. It wasnt
really something I worried about until my teachers addressed my
mother and told her I was failing most of my classes because I
was sleeping all the time. When the attacks got worse I knew
something was wrong. My mother eventually took me to a doctor and
they sent me out for a battery of tests. They thought maybe a
tumer at the base of my brain was blocking some nerve cells from
passing through and that maybe the reason why I couldnt show any
emotion without having the to go through the embarressment of not
being able to hold my head up. When the results came back normal
my doctor sent me to a nutrionist who didnt know a thing!! I
eventually found a wonderful doctor who once heard my symptoms
immediatly told me I could have narcolepsy and in 1990 narcolepsy
was just starting to become known. I spent three glorious nights
at a sleep clinic hooked up to every machine possible. I had a
real blast!! When all was said and done you guessed I had
narcolepsy/cataplexy. Yeah! I have all four classic symptoms and
the doctor was amazed with me because he had never diagnosed a
person so young before. I was the first and needless to say I
felt so special! They even offered me to come back and be like a
ginney pig for a couple of days. It was hard but I had to turn
him down. I was releaved that it wasnt something life threatening
but from the start I never took him seriously because that would
admit that I was different. Being a teenager is hard enough but
being one with narcolepsy was very difficult. I hung around the
"popular crowd" and went to all the parties which made
it very hard to hide my disease. My so called friends would laugh
and pick on me for fun. It wasnt like my disability was noticable
like a loss of a limb but once my symptoms got worse (I wasnt
taking my medicine regiously everyday) it became normal to get
teased. That kind of treatment made me very bitter and self
conscious. After graduation I started to gain a tremendous amount
of weight. I mean about 75 pounds in one year!! I struggled
through the earlier part of my twenties being depressed and
overwieght. At that time I was taking 40 mgs of Ritalin and 50mgs
of Tofrinal and believe it or not I still wasnt taking my
medicine responsibly. It wasnt until I was twenty eight and 5 car
accidents later(not all related to narcolepsy) that I found
Provigil.!!! That was back in 1999. It is truley a miracle drug!!
I am now 30 and still unfortunately narcoleptic. It really isnt
the sleepiness that I cant stand because I cant remember a time
when I wasnt tired, it is more the cataplexy that irritates me. I
love to make people laugh but having to turn away when I laugh so
noone will see that I cant control my facial muscles or sounding
like an idiot when my speech becomes slurred can make you learn
real quick how to become emotionless to avoid such attacks. It
has been almost 15 years since I was diagnosed and scientist have
come a long way!! With all of todays technology i find it amazing
that when I tell someone I have narcolepsy that they dont know
what it is until I mention Dos Bigilo!! Oh well! It has been a
long journey but with Gods help I venture to say that my stuggles
are menial compared to many others. Thank you for listnening to
my story and definetly need to get some sleep.
zzzzzzzzzzzzzzzzzz!
michelle mccarthy
mbmccarthy2002@yahoo.com
I'm going to tell you a few of
my experiences with narcolepsy and cataplexy, if I told you all
of them I would have to write a book. My first memory of
overwhelming sleepiness was in high school, my last class of the
day, I slept through it most everyday, I don't have a clue how I
passed but I did. I had notes that started out to be words but
ended up just scribbles going from the lines on the paper up to
the corner of the paper over and over again. Narcolepsy and
cataplexy is a very strange disease, people that haven't
experienced it, really would have no idea as to how it makes you
feel. The urge to control the uncontrolable is unimaginable.
I thought for years that I was just tired all the time and just
didn't have as much energy as most people. I have fallen asleep
standing up walking from the machine that I ran at work to the
work table I had to get the part from. I have fallen asleep in
doctors offices and had to be awakened by the nurse calling for
me to come back to the room and actually having to walk over to
me and shake me to wake me. I have fallen asleep in the bathtub
and was awakened by the water going up my nose. I have fallen
asleep in the tub and slept all night. I've fallen asleep while
eating and wake up and still have a bite of food in my mouth.
I've slept in church, while visiting friends and relatives, at
work, in the car. I've fallen asleep while standing, sitting,
walking, and laying down, anywhere and everywhere you could think
of. This is not a comfortable thing to do, nor a very safe thing
to do in some situations. I used to, if I went anywhere and had
to wait for any length of time, hold my purse in my lap, and wrap
the handles around my arm, just in case I fell asleep it would be
more difficult to take it from me without waking me up first.
Sometimes I feel very paranoid.
I find the most frightening experience to be that of cataplexy.
My attacks have become severe in the last couple of years, even
to the point of ending up in the Emergency Room at the hospital,
only to have the attending physician tell me and my family that
he had never heard of Narcolepsy or Cataplexy, can you
imagine....a doctor of any kind not ever hearing of narcolepsy,
you would think he would have at least heard the name before.
What a scary position to be in, when you are in the emergency
room and cant move, to be told they have never heard of the
disease you have. I'm sure he just looked it up in some medical
book and came back with the response that he gave me.........My
question to him was why can't I move........his reply.......when
you get over the shock of what your sister told you.......you
will be able to move again. Your brain telling your legs to move
was interupted by the shock of you hearing the news of your
sisters cancer returning. I was there for 5 hours, to begin with,
when my attack first happened I could feel it starting, my family
saying don't close your eyes keep them open.....they know when my
eyes close, that's it, I am going to hit the ground, that's the
first severe full blown attack I had experienced, and I had my
twin sister, one of my other sisters, my Mama, my daughter, and
my brother-in-law, present and in my front yard when it happened,
so eventually I ended up with two of my neighbors there also. My
family called an ambulance, the perimedics told me they were
going to have to get me up off the ground and my sister told them
over and over I could not get up I could not move, I, to begin
with could not even talk or open my eyes, they all tried to stand
me up but it just didn't work, I had no muscle tone, no control,
had no feeling in my body from my neck down. I finally got to the
point that I could talk but still couldn't open my eyes. I
convinced my family and the perimedics that I didn't want to go
to the hospital and especially not in the ambulance. Then when I
felt that my breathing was becoming more labored I agreed with my
family that I should probably go to the emergency room. I was
afraid, I wasn't absolutly sure that it was a cataplexic attack
at the time, because I had never had one that was that severe. It
took 5 hours to finally regain the feeling in my whole body and
to be able to walk to the car with assistance, the doctor said
for me to be able to leave, I would have to be able to walk to
the car with little assistance. I seem to have most of my
cataplexic attacks because of being frightened or sad and scared
from the news I have recieved several times of my sisters cancer
returning. We are very close, we are identical twins, we have
even shared each others physical pain as well as emotional pain.
It does terrify me, the thoughts of something happening to her.
We have always been there for each other.
Another very frightening experience is the sleep paralysis.
Telling yourself to move and you just can't move, saying to
yourself open your eyes, now. Still didn't work. And then the
panic you feel. So far sleep paralysis has only lasted a few
minutes, but when you are experiencing it, it seems like hours. I
have night terrors, I have hallucinations. My memory is affected
to some degree. Sometimes I feel that I have a delayed memory, if
someone ask me if I remember a specific incident, and I say no, I
will be sitting somewhere, maybe two weeks later and all of a
sudden, I remember what that person was asking me about. Have you
had memory problems?
I have read some articles about cataplexy, and most of them say
an attack last anywhere from 2 to 20 minutes. That is not my
experience, mine have lasted, as I told you in this story, my
longest attack was about 5 hours. I wonder have you ever heard of
anyone else having that long of an attack of cataplexy? Or if you
could tell me where I could find more on the subject . Another
question for you..... have you ever heard of catalepsy, if so,
would you share your information with me?
Sorry for the length of this story or letter,
but it isn't near as long as it could have been if I had shared
every experience I've had. ; )
Thanks
Jimmie
ColStorminslove@aol.com
I am thirty and, although I've had narcolepsy symptoms since junior high or high school, I was only diagnosed a couple of months ago. According to Stanford's website, the actual prevalence of narcolepsy may be as high as 1 in 2000 people. This makes me think, why wasn't I caught sooner? I was drinking nearly 2 pots of coffee a day! I'd like to see a small Epworth Sleepiness Scale Survey printed on business cards that could be distributed in coffee shops with pointing people to available local resources if they score high enough. Has this sort of thing ever been done? If not, why not?
Unlike a lot of your other posters, here, my cataplexy isn't so debilitating that I've let it interfere with my sense of humor. I've always had a great sense of humor (at least according to me). For whatever reasons, it's always been very self deprecating, though. Now that I know what cataplexy is, it hasn't interrupted my humor at all. All my friends know about it, too, so when I tell a joke that cracks me up so bad I start making faces or slump down in my chair or even worse, fall all the way to the floor, we all laugh even more! The only way I've modified my humor is that I've told everyone I know to help me out by shutting up if the situation is dangerous, like when I'm driving, or walking down a long flight of stairs, or doing a biochemical experiment with 15 milli Curries of radioactive P32 in my pipetteman. Everyone obeys those simple restrictions and we all have more fun! In fact, in general, my rare attacks of cataplexy have generally been fun, with one exception that I haven't heard any of your posters mention... during sexual orgasm. It's impossible for me to... how should I put this... finish strong. I know narcoleptics tend to avoid humor, but cataplexy is my least worrisome symptom, so let me share this humorous aspect of my experience... I was raised very religiously. I've had symptoms of narcolepsy since junior high but wasn't diagnosed until a couple of months ago at age thirty. All that time, when I woke up in the night with sleep paralysis (heart racing, heavy feeling on my chest, unable to move, unable to scream or even talk) I was terrified! I always thought that was when the devil was in my room. I would lie frozen in my bed praying frantically that God would send the devil away! I guess I would pray until I felt better and could move or I would fall back asleep. Either way, praying seemed to work!
I do have a couple words of caution for fellow narcoleptics, especially those for whom their initial attempts at medical management are their first time being medicated with a mind altering medication. 1) Don't confuse daytime alertness with functionality: the ultimate goal of medication for narcoleptics is to improve functionality. The first med I was ever put on was Provigil. It was a miracle for my alertness, but I almost failed out of medical school. (I would have, in fact, had my sleep doctor not been faculty at my medical school and willing to write a letter on my behalf to the deans to explain my situation.) Every narcolepsy medication has potential side-effects and thanks to the fact that they alter very complicated brain chemistry, those potential side-effects include personality/judgment disturbances. In my case, I got hypomanic and obsessive. I was horribly inefficient. 2) Don't try to evaluate yourself when you're taking a narcolepsy medication: No doubt you can tell if it helps your alertness or cataplexy, but you probably aren't in the best position to tell if it is affecting your personality or judgment. Tell your close friends, your family, and your boss that you're trying something new and go to them for feedback. I isolated myself, because I felt like a million bucks and was anxious about all the work I needed to accomplish. Of course, I ended up unable to accomplish anything and I prolonged that state by not getting some outside input until I was in serious trouble.
Jack Thomas
John.Thomas@jefferson.edu
Wow, I am amazed at some of the stories I have read. I am 37 years old with three children, diagnosed with narcolepsy about three years ago. I am grateful my narcolepsy problem is no so bad after all. It’s good to read the stories and know I am not alone and not as bad off as some. I have not been able to keep a regular job because narcolepsy, and of course have no health insurance so the battle has been a tough one. I am on adderall 30mg right now. I just upped from 20mg daily dose but still have bad days. On bad days, I get so if I stay awake, I get almost like I am drunk. I lose control of my thoughts and emotions. I can snap at any little thing… I get so ornery sometimes and to make matters worse, I sometimes don’t even remember what has transpired… and am sooooooo tired. This is hard on my family and I thank God they try very hard to understand what I am going through, and of course I become the subject of allot of laughs when I can just fall asleep about anywhere, any time in just about any position. I laugh with them, knowing this helps them to cope with the way I am…
I have tried provigil, and it seemed to work ok… but after a couple of months I really built up allot of tolerance for it. Then there was the cost… UGHHH! Ritalin did not work very well either… I come from a family that generally has much different reactions to medication than “normal” people. How weird is that?
I don’t know where I will go next when the tolerance to the adderall builds up again. 30mg is my max dosage by law… I am sure I am not the only one with the problem of not being able to keep a decent job and not having insurance… Thank God in our community we have a clinic where the fee is based on income, so a doctors visit is doable. They don’t know allot about narcolepsy and how to treat it yet, but were working on it. The meds still seems really expensive when you can only work part time and have three children to feed… so I guess, if anyone can suggest anything as far as treatment options for a person in my position, I’d be very grateful.
-Mike
w8n4abreak@sio.midco.net
Hi, My name is Bren. Female, unemployed bookkeeper. I was diagnosed with Narcolepsy about 2 years ago. The woman that I worked for, who also has Narcolepsy, gave me the name of her sleep doctor and he set me up for the overnight sleep test and the sleep latency test and diagnosed me. I was put on Provigil and the first day I took it I had a most wonderful day! I felt like myself for the first time in so many years. I had energy and an actual desire to do things. When I say "day," that's exactly what I had on the Provigil. One day. After that day, I went right back to no energy and no desire to do things. I still could not stay awake either. For several months I was like that and I was so broken hearted after tasting life again. I went back to the DR, and he changed me to Adderall. World of difference. Still had quite a bit of sleepiness but was improved. The couple that I worked for promised understanding. But it was becoming increasingly difficult for me to drive in to work without having to pull over to nap, but they still told me that it would be OK to do that even though I might be late, just so I would be safe. They told me I could make up my time later on in the day or the week which I always did. One morning, while driving in, I woke up half way in the lane to my right on a 4 lane interstate during rush hour. That was a fear jolt and I thought that I surely would stay awake after that scare but seconds later, I woke up in the lane to my left, with a big black car sliding past me like a dark, giant, silent shark. It was all so eerie. I could have killed someone else or myself or both. I promised myself that I would never again drive in the morning when I had excessive sleepiness because even though you think you can control it by eating or drinking or singing or whatever, you actually cannot and in a split second, it can be too late. I began to wait before leaving the house until the sleepiness would pass or pulling over to nap when I got sleepy while driving. The business started having financial difficulty and it was then that I realized that my supervisors didn't really mean all that they had promised. My male boss started calling me on my time that I was always making up that he didn't think that I had, and waiting at the door checking his watch, and telling me he was seeing me sitting in my car at around 10 or 11 in the morning and indicating that I had just arrived at work when I had in fact been there already 3 or 4 hours and was napping. It grew so bad that I started having Panic Attacks and Anxiety even trying to get ready for work. As the financial difficulty increased, his taunting me about all this grew worse and to make it even worse, his wife that had Narcolepsy also and had pledged to take care of me if I would just stay there and work for them and pledged that through her own experiences understood my difficulties, never even stood up for me when he got to the point that he called me in his office and laid me off. He knew that he could not do it based on my Narcolepsy so he said that I had abused e-mail and Internet access. I had not. He had someone go into my history, and not understanding the computer AT ALL, he read all the sites listed (and most of were sites belonging to our vendors or utility companies.) I admit that some were sites that I went into on break or after work. Some were sites that his own wife asked me to check out. Anyway, instead of firing me like I knew he had a desire to do, he could only lay me off. I got to draw unemployment for six months, but it ran out and now we have our own financial difficulties. I added the fact that I had Narcolepsy to my resume with the Dept of Employment because I didn;t want to be hired and then fall asleep and be thought of as lazy and be fired for it. I did not receive any calls for interviews. Because of all of this and all my symptoms (like the excessive sleepiness during the day, the bad dreams, the hallucinations, the forgetfulness and inability to remember what to call everyday things, and not recognizing landmarks that I had seen for years), combined with the fact that two months before the lay off, my beloved Dad who has always been the sunshine of my life, passed away right before my eyes after being so very ill for several months, then four months later, my beloved dog, Odie, that I had loved so dearly for 15 years had to be put down due to cancer, put me into a depression that I have yet to come out of. My sleep Dr. doubled my Effexor. And even now, just getting ready to go anywhere causes me to go into a panic and cold sweats, like I think I am not going to be there on time. I have gone from a person that my shower was the very first thing on my list every morning to get me going, to a person who will put it off for two days or more because I can''t stand to go through the anxiety. I don't think I can work outside the house because of the excessive sleepiness that I still have plus all the other symptoms. I know many of you can probably relate to these problems too. My family does not understand, neither do my friends. Please write me. I need an understanding friend. Thanks, Bren
Artsybren@aol.com
Hi my name is Robert, and my wife Judy is a narcoleptic sufferer. Her story began long before we met, but only came to light after our marriage. She is 39 years young,and one of gods precious gifts to this world. She can look back as far as seventh grade and found the signs of this widely misunderstood problem. Sleeping in class had been noticed by her teachers, but because of her class grades being a or b they did not see it as a problem. When we first met,I took the "sleep spells" as just not paying attention to what was going on, or just ignoring me. After we were married and had two lovely children, she called on day to let me know she had an accident , but everyone was ok. When she got home, she explained that she had fell asleep and woke up an instant before colliding with a cement mixer trailer.Her visit with our family doctor suggested a visit to a psychologist. After several visits it was determined that the problem was neurological, not psychological. She found a neoro who she saw many times,had latency tests done and who basically said that she should get more sleep!!! After that we found another neoro who took a more active approach to her symptoms and started her on medication. She also had her driving privileges remove due to the nature of the illness.I cant recall the meds she was on, but she took these with some degree of success, but still not 100%.She was able to get her license back so that she could drive again.These meds seemed to work for about 3 years and then stopped having a lasting effect. The doctor changed the meds and they worked for about 3 years. these included the use of ritalin. Three more children later and she is up to 60 mg of ritalin a day and working 40 hours as a computer programmer. Sleep attacks are frequent, and she spends time in the ladies room "napping". She constantly worries about driving. She has had two sleep attacks while driving which resulted once in damage to two wheels and tires on one side of our van, and a rather rude awakining by our son on the other occasion. The doctor prescribes provigal as the new wonder drug and lowers the ritalin to compensate.This works well for awhile but still not 100%.Ten months ago the meds again stopped working and she developed cataplexy. She has to go on short term med because she cannot work and the meds they gave her for the cataplexy have caused high blood pressure. So she now takes 200mg of provigal,long acting ritalin,high pressure meds,and occasionnally meds for migrane head aches. Even with all this she is still not able to work, and some days are worse than others. Most times I find it hard to believe that thing don’t get done while I am at work,but I am slowly realizing that this is not an easy illness to have to deal with. It is scary,with the nigh dreams that seem so real,the unsureness of each move you make and the realization that they still don’t know what causes this. I have heard that a neoro in New York is close to a cure, which is why I am on the net tonight. I have read many of the others stories, and would hope that those who are around these brave individuals, give them all the support in the world as this will surely help to make them feel better.,,Bob H. p.s. If anyone has info about the doc in ny, please email...thanks rhoyle271@msn.com