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| Jamie | Mary | Bob (1) | Angelique | Kathy W. |
Hi! My
name is Jamie. I'm 23. I was diagnosed w/Narcolepsy
two weeks ago. This has been going on for many years, but I
had a hard time finding a doctor who didn't think I was
"lazy" or "spending too much time at the
bars". I am taking Provigil. My dose was doubled
1 week after I began taking it. I don't feel any better,
worse actually. I'm had more migraines in the past two
weeks, than in the past year. I'm barely eating because I'm
nauseous all the time. I like to hear from other people, if
they've experienced any side effects or are on different
meds. Please post this and my e-mail address...I'm
interested in whatever anyone can tell me!
Jamie - Brat 2417@aol.com
I think I'm in hell. I spent a grand on a sleep study, to prove to a doctor that I don't have apnea; and he was supposed to set me up to see a neurologist. The results came back as I said they would, no apnea ... but very odd reading. The doctor left the country and moved to Canada. I have no insurance and sleep at least 14 hours a day, more if stressed. I don't have to tell you what I mean.
Any advice on how I can find a doctor in North Carolina, who is open minded about narcolepsy and charges reasonable rates?
I have fought this battle for 33 years, honestly I'd rather be in hell. Thank you for any help you can give me.
Mary - nanallover@aol.com
Great Web Page.
I have been diagnosed with narcolepsy for 6 years now. I am a 54 year old attorney, who looks back on the likely fact that I have been narcoleptic for the past 30 some odd years. Just thought it was a tendency to get bored and fall asleep, or some other inability to be both relaxed and attentive at the same time.
Presently I am taking Provigil, having been a drug study group in Seattle, Washington just prior to the FDA's approval. That and some strong antidepressant (Effexor) has me coping much better, but still nodding off frequently during the day. While I am able to take short naps at work, the other strategy I am building on is to schedule frequent actively engaged periods where I get up out of my sedantary rut and read of brainstorm on the go.
My employer (the State) is hostile / discriminatory in their managing a perceived liability in me being or claiming to have a disability. I have been set out to pasture so to speak. The recent 9th circuit decision Barnett v. US Air though not on point as to narcolepsy, provides a great explanation of the employers duty to take prompt positive actions when an employee requests and accommodation.
Meanwhile, I look for a good ADA attorney here to represent me in a EEOC complaint and whatever "disloyal" actions I can to protect my job. or create the basis for a strong (and hopefully rewarding) process of changing my current situation.
The recent news about hypocretins, sounds very positive to me. What I have read in addition to a possible autoimmune system malfunction that takes out the hypocretin sensitive cells, is the alternative thesis that it might be a result of some enviromental toxins. That made quite a bit of sense to me, when I recalled that my earliest vivid memory of having "uncontrollable" sleep attack, was from a period of time when I was painting apartments and inhaling a lot of those hydrocarbons? / volatile fumes associated with oil-base paints.
Thanks again for the enjoyable WEB site and the great work you have put into it!
Bob H. - ib99bob@aol.com
I was diagnosed w/narcolepsy 2 years ago (almost 3 now). I cannot take the newer drug prescribed because of kidney trouble. However I do take ritalin. I had a small scare w/abnormal blood tests concerning the liver. I wondered if anyone else had experienced anything like this. Please let me know, it is very frustrating not having anyone really "understand" how consuming this disorder can be. It was a relief to find this site and read of others experiences. I now do not feel so lonely. -Angelique - Qange@aol.com
Hello Melody,
I am a 51 year old woman who has basically been in denial for
several years. I ignored all of the symptoms I had been
experiencing because I was afraid of the diagnosis. I thought the
sudden weakness I was feeling were early signs of MS or ALS or
some other horrible disease. I know it seems absurd, but when I
happened upon a description of Narcolepsy while browsing the web,
and was able to identify with all the symptoms, knowing what my
problem actually was took an enormous burden off my shoulders. I
realize that Narcolepsy is not a curable disease, but am glad to
know that there are ways to control it.
I had been very happy and successful in my career (Piping
Engineering) until the symptoms caused me to lose my last job. At
that time I had no idea what was happening to me and was fired
for "sleeping on the job". I was embarrassed and most
of all scared at what my future might hold.
I am now working as an outside sales person with a major home
remodeling company getting paid on commission only. The job
allows me more intermittent free time and I am not sitting in
front of a computer waiting to fall asleep. It's not my job of
choice, but sustains me at this time.
I haven't been to a doctor, yet. I am afraid to go there with a
"self-diagnosis" in fear that he will not believe me.
My family is very insistent that I take care of this problem and
will back me up, but I still am a little hesitant. I will
probably go in and give him a list of my symptoms and see if his
diagnosis matches mine. I am 100% convinced that I am right. I am
not a hypochondriac .... I've only been in the hospital once, for
36 hours, to have my daughter. I see the doctor once a year for
my mandatory exams, so I don't see myself as a medical canvas
with imaginary diseases dotting the surface.
I have read all the stories, and mine is very tame in comparison
with many of the others. That, of course, doesn't make it any
easier for me to live with the fear of falling asleep at the
wheel, on the job, or any other inappropriate place!
Thank you for allowing me to vent .... I just needed to talk to
someone who knows the score.
Best Regards,
Kathy Wehba - kathiejay@aol.com
Hi, my name is Joe, I have had narcolepsy since around 85' I was in 5th. grade. It wasn't diagnosed until my freshmen year in high school.I haven't had to deal with the hallucinations, but the loss of muscle control I have. The first time that I really noticed it to be a problem was when me and a couple of friends went out to supper,we were sitting at a booth just doing the typical teenager thing when I started laughing. I started laughing and my whole body went limp. I almost ended up under the table when my friend pulled back up in the seat. When things like that happen you just want to hide in a corner or something. But the whole narcolepsy thing is anything but funny. It like turns you into a social outcast. In high school people would point and laugh when I'd nod off at my desk, and when teachers would take time to ask what was wrong I couldn't hold my self together long enough expalain myself. Narcolepsy to me is like some crual demented joke that life is playing on me. Thanks, Joe
I really don't know much about this disorder but i really need someone to talk to that may be able to help me figure out if i have this disorder also. It started about 6 months ago, first i started sleeping maybe an hour to an hour and a half at a time. Always waking up, few minutes later go back to sleep for another hour or so, then i began talking in my sleep, yelling, fussing, cussing and all. Then it was like i would hear voices and i would communicate with them back and forth. Now, when i go to sleep, i don't care how many minutes it is that i am asleep, when i wake up i am on the floor. Don't remember getting down there and if i were to fall out of the bed it would wake me up, but this is every night, i hate bedtime, i hate to go to sleep, It also happens during the day so it really does'nt matter when it is day or night. I see things that are'nt there, i reach for things that are'nt there and sometimes i wonder if i am just losing my mind. Please give me some kind of answer to what could be wrong with me. I need help bad, I thought of telling my doctor, but i feel so stupid. Please contact me. Glenda413@aol.com
Hi, I was looking for info on narcolepsy, and found this site. I really appreciated reading stories from other people with this disabiling condition. As I for the most part go through it alone. I think you have to virtualy be one to understand one.I would really like to hear from other narcoleptics. email me at oceansummer5@icqmail.com .Thank-you for taking the time to make this site.
Hi my name is Sascha and I am 26years old. I have been having problems with my sleeping for about a year and a half. I have been suffering from sleep paralysis sometimes with hallucinations. Like Matt, I experimented with designer/club drugs for a prolonged period of time while in college. Unlike him, my symptoms started during this. I have long quit my partying ways but, I almost have to wonder if I caused this to happen to myself. The symptoms came and went, sometimes dissappearing for months. Within the last few months I have been experiencing these symptoms again and more frequently. I just went to see a neurologist and he is the one who mentioned narcolepsy. I do find myself to be more tired during the day but never at night. I am having an MRI done and a sleep study to determine if I actually have narcolepsy. I only wonder if anyone can tell me if I caused all of this to occur? I am too afraid to ask my MD. and am desperately seeking answers to why this is happening to me. Thanks, Sascha - DIGGER5432@aol.com
Hi, My name is Regina. I was just diagnosed today with Narcolepsy. It is really strange, I have been waiting over two years for someone to be able to tell me what was wrong with me and that they could do something to help me. Today was, in a strange way a relief for me. I don't really know anything about narcolepsy or what I should do about it. But for the first time in 2 years I felt like there was hope. Doctors have been telling me there was nothing they could do, I just needed to get more rest. Not only do I have narcolepsy but I also have fibromyalgia. I suffer from so much pain all the time. I just assumed the tiredness was just part of the fibromyalgia and I just had to leave with it. For so long I thought I was dying from some unknown diesease. The numdness in my arms and legs when wakening had me completely baffeled. I'm only 30 and I thought things like that only happened to older people. I kept thinking I have three children to raise, this can't be happening to me. So many bad thoughts went though my head. Not knowing what it was, was the worst. Today I have hope that soon my life will be normal again. I would love to hear from others. Sincerely. Regina - O1boobear@aol.com
Diagnosed with narcolepsy at age 45. Probably had at least 10 years prior. All symptoms. First falling cataplexy at age 45, followed by diagnosis shortly thereafter. A year of trying every drug known. unlimited amounts of dexedrine.anti-depressants, up to including psychotic drugs such as lithium. Results-strapped in wheelchair to keep from falling out, Could not walk, communicate, or be around my children. Sight or sounds of them resulted in complete and total continuous cataplexy.. Spent all my time dreaming, hallucinating, floating around room, and then----went to sleep lab and tried some kind of new drug. funny sounding name, gamma hydroxybutarate. Went to bed, took one dose,three hours later, another. I wake up, open my eyes. there stands my wife. I look at her and smile. Nothing happens. I don't feel funny. I'm not going out, Sometings different. I should have been paralyzed. I sit up . Stand. I can do it. The next 15 years, I lead a nearly normal lif! e. Wean myself off the drugs. takes a year or more., I now only take GHB and a mild tranquilizer at bedtime (helps with the bad dreams). A true miracle. My daytime sleepiness is reduced and contollable with a couple of 10 minute naps. Still must be careful with laughter and the kids, but can hold the grandchildren and lead a relatively normal life. Pray that some day soon this miracle will be available to all of us. Larry
I am a 33 year old female and after all these years my psycholgist and psychiatrist are beginning to believe I have Narcolepsy. My friends used to always tell me that all I ever did was sleep and that I was always too tired to do anything. Thus, I guess why I can see I have had a problem with my weight all my life too...no energy...weight gain. I never looked further into it because I thought it was "normal" and that I was just tired all the time. I would fall asleep in class all through high school and junior high and even in college. I can't read a book without falling asleep unless I am sitting at a table in a well lit room with a cup of coffee. Well recently my doctor has prescribed Provigil and what a difference it has made. I don't feel jittery or "wired." It's great. The only problem is that it is not covered under insurance and is really expensive - around $180 a month. Well that's it for me...good luck to you all.
I just would like to say how relieved I am to have finally found an answer to what has been happening to me for the last 2 years. About 2 years ago I began having episodes of cataplexy, where my knees would buckle and my head would bob uncontrollably as I tried to support it, anytime I encountered strong emotion, laughter, anger, you name it. I thought I was going nuts. I have trouble focusing my eyes and keeping them open when watching tv, if the show is funny or something I'm really interested in. I tried explaining this to a doctor, who wanted to put me on medication for panic attacks. I knew instinctively that something different was going on, so I declined and kind of dealt with it until a few months ago when I began having sleep hallucinations. I've always been apt to sleep, I could sleep round the clock easily, and dozing off in the evening on the couch, I would hear people talking-people in my family who live hundreds of miles away. This led to a breakdown for me, because it was so frightening, and I just recently spent 3 weeks hospitalized for what everyone thought was schizophrenia. I had an episode of night hallucinations while hospitalized, and had mild cataplexy and still no one caught on to narcolepsy. I just knew it wasn't schizophrenia, and when I returned home I quit the medication they had me on and whammo, I started having the sleep paralysis big time. It's terrifying. I'll lay down and feel what can only be described as electric shocks throughout my body, I'll doze off and suddenly wake up with what feels like someone sitting on me. I can't move at all, no matter how hard I try, and will hallucinate that there are people in the room, someone will be talking to me, ect. When I do come out of it, I'm wide awake, I understand it was a hallucination, and I do not have any schitzoid symptoms at all. The next step is seeing a doctor and getting on the right medication. I'm just so thankful to have found this site and to be able to give this a name. Thank you so much.
Melody, Hi my name is Darrin Im 29 Years old, I was in a car wreck in may of 1999.
I was missing a truck driver who was asleep or something, so i hit a tree because he swerved back on the road, I laid in the bar ditch from about midnight till 6:30 am. Lazy law enforcement, because it was called in three times. traumatic head injuries, that was all it was, GOD and A GREAT ANGEL kept me alive, my skull was shattered and i lost my left eye, was only in ICU for 20 something days, Now after trying to deal with all my problems, and all my butt created for my wife and two lovely little boys for one year and 8 days, " I GOT NARCOLEPSY". I created about 40 Days of Hell because of Doctors,Sleep studies and more doctors wouldnt do anything for 35 days so I turned to illegal drugs and alcohol, mainly to actually be awake for more than 3 HRS in a 24HR Day my narco., i did not feel able to get off the couch or out of the bed in my 3 HRS of being awake. Finally I got my sleep study done and given medications but im on the third one now it is working alot better than the provigil, ridalin, ever did, so life is starting to look a lot better.
This past march i went to texas to visit my grandchildren. it was a saturday. we were going to get our picture taken with the grandchildren then to lunch. at lunch i said to my husband that i was hitting that wall. i could always feel when i was going down. my son his wife and children were all at the table. my son said my speach was slurred, i was rotating my head as if i could not see, i could not stand..some how they got me in the car and to their home. put me in bed. two hours later my husband woke me up.i felt fine. what i find about my sleeping is that it is two hours--no one can wake me. i called my doctor as soon as i got home. i had cat,mri --everything was fine. my other doctor who has been treating me for bipolarism diagnosed me. i was very up set because i was just comming to terms with bipolarism and now learned i had narcolepsy. i wanted to know if i was going to get something else next year. i do not know , but i have a feeling one caused the other.
Hi, I am a 28 year old female with two beautiful girls. I was diagnosed with narcolepsy about a year and a half ago. My mother is 65 and has had narcolepsy since her early teens. She has raised 11 children and been married for 48 years. She doesn't drive or work outside the home. My mother always said that it was not hereditary. I just thought I did not get enough sleep. In high school I took caffene pills to stay awake. I began falling asleep behind the wheel a few years ago everyday. I had a stressful job, so I blamed it on that. I have always had very real dreams that would terrify me.
No one understood, and I didn't either. I thought it was normal. I told my family physician that I was tired all of the time. I mentioned that my mother was narcoleptic. He gave me a blood test and found out I had the gene. I then went for a sleep study. I am taking Provigil and I hope and pray I never have to go without it. It keeps me from falling asleep while driving and at work. It also helps with the nightmares. It is amazing. I still get sleepy throughout the day because I sit behind a desk all day, but my workplace is very understanding. I just walk around when I feel sleepy.
I do not feel so alone reading your stories. I am able to work and take care of my girls with Gods help and my medicine of course.
Christine - wlltc@aol.com
Hi
We are very excited about finding all of this. My mom is narcoleptic as well as cataplectic, and was first diagnosed at approximately 19. No one knew what it was but knew she needed meds to assist her in staying awake. She wasn't properly diagnosed until she was probably in her early 30's. My mom is now 77 and has been involved with Scripps Sleep Study Center for about 16 years. She had run the gammut on meds and she also has cataplexy, which, currently is under fabulous control with a newer med called Celexa. It is a new antidepressant which you may have heard about already. We would love to chat with or e-mail others who are afflicted, as the letters we have read here show that sooooo many victims have no idea where to start, or feel totally foolish because they just can't comprehend a sleep problem as being just that - a VERY LEGITIMATE problem! Would love to hear from anyone! Write us (Bonnie & Cheryl) at: LostinSD12349@aol anytime! We have lots of info and experience to share.
Bye!Hello!
My name is Cheryl and my mother, Bonnie has narcolepsy and cataplexy to the max! She had been involved in several sleep studies and medicine studies. She has currently been put on Provigil and Celexa. She has spent most of her life on Ritalin, although before being properly diagnosed, she went through the ringer of Dexadrine and Dexamill. She was fortunate enough to get involved with Scripps Sleep Center and Dr. Dement, who has a web site and writes weekly articles. We have been through the mill on this and would love to correspond with anyone who needs, cheering on, cheering up, some place to vent, cry, have a fit, or whatever suits your needs. We understand that certain states are way in the dark on sleep disorders and it is difficult to find doctors and facilities that care for the sleep disorder patients. Please write to us! We know of what you speak!
Cheryl & Bonnie LostinSD12349@aol
Melody,
My name is Crystal and this is
my story. I am 28 years old and have been diagnosed with
narcolepsy since 1998 although it was suggested to me that I had
this disorder a couple of years prior to being diagnosed by a
physician. After reading some of the stories on your site I found
it comforting to see that so many young adults have been
diagnosed so early on. Looking back at my highschool days and
early twenties I do not have very pleasant memories. At that time
I chalked it all up to depression and had a very rough time
socializing and just having the energy that all my friends seemed
to have to go and do all the things teenagers do. I feel if I had
found out early on what the problem was it would have greatly
helped me to overcome a lot of these difficulties. Not to say it
has gotten easier but it is comforting to know why. I must say
life overall has been better, a lot better. I have realized the
ignorance that certain people have when it comes to narcolepsy
and refrain from telling or talking about it with just anyone and
even then when I try to explain things like the cataplexy, sleep
hallucinations and sleep paralysis they look at me with this
blank expression and I know they are totally clueless. This and
fact of not knowing anyone else with narcolepsy is what makes
this a lonely place to be sometimes. I have a very good sense of
humor and credit that to getting through all the rough spots I
have encountered and will continue encounter. The cataplexy makes
it difficult sometimes but I will continue to laugh for it is the
best medicine I have found. Speaking of medicine I am on so
many. I take Provigill twice a day, Ritlen twice a day,
Paxil 30mg in the morning and Neurontin 600mg at night and still
with all these medications have problems. It can be very
discouraging at times but I know I am better off on the meds then
not having them at all. Having this disorder and maintaining my
privacy in the workplace has been very frustrating. I am
Senior Vault Teller in the banking industry. I have been with
this company for two and a half years. I have had many problems
with employees coming to me asking about my narcolepsy that I
have never even told. This is a big problem to me considering I
am very private about my disorder. I believe my supervisor is
responsible for leaking my medical info. I don't mind someone
asking questions, as a matter of fact I like when they ask
questions at least I know they are trying to understand but when
I have never even mentioned the fact I have narcolepsy to them is
what ticks me off. I am in the process now of turning some
medical records in to go into my personal file so that I may
somewhat be protected from termination. I have also made a point
to make copies of these records, job reviews and anything else I
feel is pertinent to my employment. I'm not sure anything I have
written will help anyone else but it has helped me just to write
it all down and know that when someone else reads this they will
at least understand and not have that blank look on there face
when doing so. Thanks Crystal -
PeachesHoneycutt@aol.com
Hi Melody--
First of all, thank you for a wonderful site!
For the first time in my life, I realize I'm not completely
nuts. I'm a 37 year old mother of three who has suffered
from hypnogogic hallucinations (never knew what they were
called), and paralysis since I was a little girl. The
episodes always happen as I'm falling asleep and I always have
the sense that there are demons in my room with evil
intent. I can hear them whispering and cackling, but can
never quite make out what they're saying. It's completely
and utterly terrifying, and several times I can swear I've
actually left my body out of sheer terror, though I realize
that's just part of the hallucination. I was so embarrassed
and confused about these episodes that I never even told my first
husband about them, though many times he was lying right beside
me while they occurred.
I have also, always, my entire life, needed a LOT of sleep and
find it extremely hard to get up in the morning. Even after
sleeping 10, 11, 12 hours a night, I still often need to lie down
and take a nap in the afternoons, though I've never fallen asleep
at the wheel, at work, or in the middle of a conversation.
I'm a waitress and bartender--maybe it's the physical activity
that keeps me awake?
I also begin dreaming within minutes. Last night, I had a
really weird, vivid dream that woke me up, but when I looked at
the clock I realized I had only been asleep about 10
minutes! I never realized this kind of thing wasn't normal,
and it happens to me all the time.
I've never experienced cataplexy, but I often feel weak in my
arms lately. For instance, I can't keep my arms over my
head when washing my hair--I have to keep putting them down to
rest them. And several times at work, I've felt like I'm
about to drop an armful of dishes and have barely made it to the
table in time. Could this be a form of cataplexy? I'm
terrified that this will begin to affect my job. I love
waitressing, and it's all I've ever done (for 23 years).
I've never been to a doctor for any of this because I never
looked at each of the symptoms as part of a whole before.
Now I'm strongly suspecting narcolepsy, which would actually be
preferable to "laziness". Just this morning
my husband called and woke me at 11:00, after I'd slept
ten-and-a-half hours. He was like: "You're still
sleeping?!" I said, "You know I need a lot of
sleep, hon." (At least that's what I've always told
myself.) He said, "Denise, nobody needs that much
sleep."
There is a sleep disorder clinic near me. Do you think they
might be able to tell me whether or not I have narcolepsy?
Does it sound like it to you? Thanks so much for your time,
and your great site.
Denise - ElysGrl@aol.com
Hi Melody,
I am 29 years old and a father of 5 sons. My
problems started when I was a teenager and just thought between
running around and working, I just wasn't getting enough
sleep. Then in my early 20s I noticed it didn't matter if I
slept for 2 hours or 12 hours, I still woke up feeling like a
freight train hit me in my sleep!
It goes through good spells and bad spells, with
age the bad spells get worse and the good spells are less
frequent. I have a few strange symptoms I haven't
heard anybody else mention. After years of my family doctor
looking at me like I was nuts, his new physicianing nurse decided
to check it out, her daughter has it.
I never heard of it before. Who cannot simi-control
their sleep? I thought it was a matter of willpower I didn't
have. After the first 20 sleep, the tech couldn't wake me up.
Same for the others. When I am woke up, I am violent, my eyes are
open but I do not know what I am doing. I talk to those trying to
wake me up but I remember nothing. When my wife told me I was
hurting her every morning I didn't believe her...till she video
taped it. I sleep walk every night, I fall asleep several
times a day!!! Even though I'm on 300 mg Provigil and a lot
of Dexedrine. If anybody else is like this please let me
know so I won't think I'm crazy. GCamps101@AOL.COM
Gary Campbell