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Melody,
I've recently been diagnosed with narcolepsy and cataplexy. I'm
ding the Ritalin thing and trying to figure out my dosage. Its
frustrating. My marriage of 14 years is ending and I'm forced to
start a new life. Without boring anyone with the details, lets
just say that it was not my disease that caused it to fail. It
was just an added insult to the turmoil that was going on in our
lives.
I've only recently been checking out the web for info and am
encouraged that research is moving forward to possibly one day
give us all chance to live a more normal life without ingesting
drugs all day long. I have to say that without them, I would not
have a life. It was ruining my life in all facets. Lathargic and
fat??? No, it was so much more. Chronic fatigue, unclear thinking
and a danger on the road. It frightens me to know how many times
I could have killed myself and others too.
This disease is debilitating. No one can understand except those
who have it. It made me look like an idiot at my job and I lost
opportunities because of it.
I'm a 40 year old and it struck me about 4 years ago. My father
has been this way since the age of 19, but of course he learned
to live with it and accepted it for whatever it was. He's 70 yrs
old and a farmer; sets his own hours to nap. He is also stubborn
and I know will never get diagnosed. He just lives with it. I
can't!!! I needed help and found it through a sleep study.
There's a great deal of stress in my life right now and I need to
take the time to reduce it and heal as a person. Not only from
the loss of my marriage, but from the loss of my self esteem as a
professional and a person. Its hard to explain where it left me
emotionally. Too much has happened all at once. All I can do is
ask for the peace that God brings into my heart and a new
begining to the rest of my life. At least I can have one thanks
to the drugs.
Thanks for being there.
Kathy
Melody, I am just learning about narcolepsy. I was diagnosed less than 1 year ago. To be honest I was relieved. I do not sleep throught the night. I'm very restless, but when I take something to help me sleep, I sleep for 10-12 hours. I have always felt tired and wanting to sleep more and more. I have fallen alseep driving and I couldn't stop it. Finally, after teaching for 2 years and being miserably exausted all the time, I had a seep study done and another test where I had to nap 4 times throughout the day. I went into REM sleep in 5 mins. the first nap, 8 mins. the second nap and 10 mins. the third nap and I think 15 mins. the fourth nap. All four naps I had to be woken up because I was so deep into my sleep. I am now on Ritalin. It has changed my life. I still don't sleep well at night without over the counter sleeping pills. I feel more energetic during the day, I get more accomplished and little tasks don't wear me down. I still have some sleepy episodes and I nap sometimes. I am wondering how safe ritalin is and what the long term side effects are. What about when I want to have children. Surely I can't take ritalin when I'm pregnant. Any infromation you have for me would be great! I just feel very ignorant about the disease and the effects of ritalin on my body. I look forward to contributing to your site and hearing from you. Thank you for your time.
Kristen
Hi! My name is
Margaret. I have Narcelepsy, a sleep paralysis and halucinations
in the night as I "sleep". I was diagnosed when I was
twenty two and was advised to take Cylert- a form of Ritalin, to
keep myself alert during the day. I now am seeking advice from a
new sleep clinic and they promote using a drug called
-prov----???? Have you heard of this "new" medication?
Do you know of any side effects? Where I can go to get more info
on medications being used and the side effects?
ktmkmom@aol.com
This is probably the only truly good thing that was brought about by narcolepsy. I was working in a bank and had to go next door (actually it was about 150 feet) to pick up a prescription. As I was walking back I started to feel the weakness in my body that told me "find a place to sit down NOW". Good old cataplexy was rearing its ugly head. As I staggered closer to the bank, I noticed a customer pulling into the parking lot. It was a local businessman that I had waited on several times at the bank and, being desperate, I called out his name. Lee (the customer) came over to me (by this time I was leaning against a post) and I asked him to help me into the bank. I told him (in my haltingly cataplexic way) that I had a disorder that sometimes made it difficult to walk and talk. He very gentlemanly escorted me into the bank. Lee and I have been together now for 13 years. He has been my greatest "supporter" in every way.
I guess I will start with my first experience with narcolepsy (the first that I know of anyway). I was a single mother living with my own mother at the time. I had gone to bed about 9:00 when shortly after turning out the light, I started feeling a strange tingling in my head. The tingling spread throughout my body and I then realized that I could not move or speak. I heard someone laughing. It sounded like a man and also sounded very evil. I was terrified. I had no idea what was going on. I felt hands on my shoulders pushing me down to the end of the bed, then to the other side and back up again. This continued, for what felt like about 2 or 3 minutes, until I felt myself being picked up and thrown across the room. I crawled to my bedroom door where I could hear my mother in the next room. I heard her turn off the light and walk into the living room. Just as I was able to reach up and open the door, I "woke up". I was laying in my bed in the exact same position as when it all started. I was still scared to death, not knowing what had happened. I got out of bed and walked to the living room. As I was walking to the living room, my legs kept giving out. I attributed this to the strong amount of fear that I was still feeling. I talked to my mother and found out that she had, indeed, just been in the other room and turned off the light...just as I had heard while crawling to my door! This scared me even more because it added reality to what had just happened to me. That was just the beginning.
There was the time my son (who, at the time, was about 3 years old) somehow got a hold of my tweezers. I saw him heading for an electrical outlet and, because of my emotional response (fear), I had a cataplexic attack. I could not move nor could I speak. I helplessly watched as my son put the tweezers into the outlet. He gave out a cry, dropped the tweezers and never went near an outlet again. We were so lucky. When I was finally able to move (after hugging my son at least a thousand times) I picked up the tweezers. They were totally distorted from the shock. Somehow the shock managed to stay with the tweezers allowing only a small shock to touch my son. Someone or something was watching over my son that day when I couldn't. Telling this, even after all these years, still brings tears to my eyes.
Other than the above, the worst part of narcolepsy is the hallucinations. I can deal with the other symptoms because they are more physical. The hallucinations are uncontrollable. Once they start, it is nearly impossible to get out of them until they have run their course. A fine example of that was one that I had when I went to bed early this morning. I was lying in bed when I could feel a presence in the room. I couldn't see anyone a first but I could feel it and hear it. It was (in my mind) the devil. He outlined my body with live wires and proceeded to pour water on me so that I was constantly being shocked (whether or not this could really happen is irrelevant, I believed it at the time). I could smell, taste and feel the shocks. My fear was very, very real. Then I was able to see him. He was red but not because that was the color of his skin. It was because he had no skin. His lips looked as though they had been shredded. They hung off of his mouth. Other than his lips and a somewhat pointed chin, his head was fairly normal (meaning it had skin). You have no idea how hard this is to talk about. It embarrasses me. He had a very large penis which was erect. I felt that he intended to rape me. Luckily, I came out of the hallucination before that happened. At the time that all this is happening, I am paralyized and cannot make a sound. It is real. I truly believe everything is happening because I see and feel it. Of course, when I come out of it, I realize it was just another hallucination but the fear is hard to shake off. It takes awhile for me to relax enough to actually attempt to sleep. cataplexic@cataplexic.com
HELLO MY NAME IS RICK. I AM A 25 YEAR OLD LIVING WITH NARCOLEPSY. IN MY TEEN AGE YEARS I MUST HAVE BEEN DIAGNOSED WITH ABOUT 25 DISORDERS AND TREATED WITH ABOUT 60 DIFFERENT TYPES OF PSYCH DRUGS. HELL I WENT TO A COURT ORDERED TREATMENT FACILITY AND WAS COURT ORDERED TO TAKE THE DRUGS PRESCRIBED TO ME BY A PHYSICIAN IN THE COURT ORDERED FACILITY. HE DIAGNOSED ME WITH NARCOLEPSY AND TREATED ME WITH AN AMPHETAMINE BASED DRUG. ACTUALLY IT WORKED AND WORKED WELL AS I FELT AND HAD BECOME NOTICABLY NORMAL TO OTHERS. WELL WITH ME BEING ON PROBATION THEY DIDNT LIKE THE FACT THAT I WAS TAKING THIS TYPE OF MEDICATION AND REVOLKED MY PROBATION. THEN CHARGED ME WITH THE USE OF A DANGEROUS DRUG. AT SENTENCING THE SAME JUDGE THAT ORDERED ME TO TAKE THE MEDICATIONS PRESCRIBED BY THE PHYSICIAN AT THE COURT ORDERED TREATMENT FACILITY. THEN, AFTER FINDING OUT WHAT TYPE OF MEDICATIONS THEY WERE, HE THEN AND WITHOUT CONSULTING A PHYSICIAN ORDERED ME TO INSTANTLY STOP TAKING THE MEDICATIONS. WELL AS A RESULT OF THIS I WAS PLACE ON AN INTINSIVE PROBATION WITH MORE STRICT RULES. WELL AFTER TAKING THIS MEDICATION EVERYDAY FOR A YEAR TO INSTANTLY STOP I HAD EXPERIENCED TREMENDOUS PAIN AND LOST MY ABILITY TO WORK AND GO TO COLLEGE. FOR THE MOST PART I WAS LIMITED TO BED AND ATE A LOT OF EXCEDERIN MIGRAIN. WELL WITHIN ONE MONTH I WAS RE-REVOLKED OF MY PROBATION FOR NOT FOLLOWING THE GUIDLINES OF INTENSIVE PROBATION I.E... CONDITIONS REQUIRING ME TO PROFORM COMMUNITY SERVICE AND 'A.A' AND NOT BEING HOME WHEN I WAS SUPPOSED TO BE." RATHER I DIDNT ANSWER THE DOOR BECAUSE I WAS SLEEPING." AT THIS POINT I WAS SENT TO PRISON FOR 2 AND 1 HALF YEARS. IT'S A SHAME, AS I HAD ALL KINDS OF SUPPORT FROM MANY DIFFERENT SLEEP AGENCIES. ALL THE LEGAL DOCUMENTS TO SUPPORT MYSELF IN THIS. AND MY APPEAL JUST KEPT GETTING POST PONED UNTIL I GOT OUT IN FEB. 1999. EVEN TODAY I HAVENT HEARD ANYTHING ABOUT IT. THE U.S. DEPT. OF JUSTICE REPLIED :"WE DONT INTERVIEN IN JUDICIAL MATTERS OF STATE LEVEL SUPERIOR COURTS CONTACT YOUR STATES ATTORNEY GERERAL" THE SATE OF ARIZONA'S ATTORNEY GENERAL REPLIED:" THIS OFFICE DOESNT REPRESENT PRISONERS." WELL I JUST KIND OF PUT IT BEHIND ME AND WENT ON WITH MY LIFE. NOW WORKING AS A BUSINESS ACCOUNTANT , UNMEDICATED , AND SUPPORTING A FAMILY OF 5. I DO MY BEST TO APPLY LIFE TO ACCOMIDATE MY DISABILITY. I AM STILL INTERESTED IN ANY LEGAL ADVICE IF ANY THAT YOU MAY SUGGEST.
CONTACT ME AT azeagle@winslow-az.net
THANK YOU,
RICK D. LEE AZ.
Hi, thank you
for posting this sight
I have recently met a wonderful man who could quite possibly be
"the one". The other night something happened
that scared me. We were talking and watching a movie and I
look over and he was out. I thought he was just really
tired and let it go. He woke up minutes later with a dazed
look and talking but not making any sense. Thats when he
told me that he had narcolepsy. He made it seem like it
wasn't a big deal so I didn't bring it up again that night.
The next day he showed another symptom, cataplexi. it was
like his body went limp and we sat down on the floor together at
the store we were at.
He would get sleepy while I would drive and he would doze off
while I drive or take a quick nap at home. I thought that
he had not gotten a lot of sleep and was just sleepy.
It breaks my heart to see him go through this. He says the
hardest part is being with people he really wants to spend time
with and falling asleep. He said that a lot of people do
not notice and just think hes tired. I noticed right away
that something was wrong.
He said a few years ago he got in a very bad auto accident and
luckly he and nobody else were hurt. He had fallen
asleep. he said he is much more careful now and will pull
over and take a nap when hes tired.
What concerns me now is our future. We have talked about it
and he still acts like its no big deal. He is a very strong
determined man who has his whole life ahead of him and when I see
him fighting to stay awake in the middle of the day I feel
helpless. I wonder if it will keep getting worse.
What can be done to help him? Will our children have
it? What does our future hold. I think I just need to
be informed. How does it feel to have it? Is it as
bad as I imagine? Answers would be helpful, I think if Im
informed I wont be as scared of it. Thank you. SIMYCA@aol.com
Hi!
My name is Traci, I am 34 years old, the mother of an 18 year old
son and mother of a io year old son, who has a mild autistic
disability. I have been on medications for the last 3 years. I
was diagnosed with PTSD and with severe depression. My Dr. has
had me on Zoloft,Neurontin, Klonopin, etc. I am now on
Paxil,Neurontin, Klonopin, Adderall, and was just recently put on
Trazodone. I have had a sleep disorder for over a year. I have
been on Ambien (didn't work) Sonata (didn't work)
Phenigran,(didn't work) There have been a couple of others also
that didn't work. I can't wake up in the mornings. My husband is
so frustated with me that are relationship is a mess. I tell him
later that I don't remember him talking to me and he becomes
angry and calls me lazy. If I sit down in a chair I nod off. I am
attending college but I have missed 2 times because I couldn't
wake up. Last week I missed my son's ARC meeting at school
because I couldn't wake up. My life is one great big mess. I was
asking my pharmicist about side affects for Trazodone and he
began telling me that I could have Narcolepsy. He said to mention
this to my Dr. at my next visit. He also told me to read info
from the internet and see what I think.I am so confused I don't
know what to think. I can't fall asleep at night. Finally after
falling asleep around 4 or 5 o'clock I usually dream, dream,
dream. Usually scary dreams. Can you please help me by giving
info or your opinion??? I don't know where to go from here.Thanks
for any help!!! I don't care if you share this with
anyone. Thanks again,
Traci - TJBSSP@mis.net
i am now 28 and was diagnosed as being narcoleptic just a few days ago, i have an apointment to discuss medications with my neurologist and i am hopeful after much of my own research that i will get provigil. i think the most upsetting thing for me is that public attacks are unavoidable and no one seems to understand. they ask you to explain your symptoms and when you do they ALL say "oh i have had that happen from time to time, you just need more rest and vitamins". no one seems to understand that narcolpetics get sleep.<- it is an unavoidable activity. and most of us are probably on some vitamin regimine long before we get our diagnoses, if for no other reason than sheer desperation for feeling sluggish and beaten and looking for relief on any level. immeadiately people dismiss your suffering because they have all been tired and think they are also tired and would love to get "by" with "whining" and not have to do anything. we are looked upon as weak and lazy and rude occasioanlly stupid. i have many moments throughout every day when i should be paying attention to some event and i slip off into dream land for sometimes several minutes and wake to find people asking me if i am even listening and becomming irritated that i have to contuinually ask what did you say or what do i need to do...situations with strangers are very stressful because i wind up looking stupid due to the fact that i cannot keep up with conversations and many people do not have patience, or some other more important decent human quality. i have driven several miles before with no recolection.. these things stress me out and frighten me. upon waking i have moments of inability to speak or move, usually that lasts only seconds but sometimes i am unable to speak for 15 minutes.. dreams are vivid and spooky , though i know i am an adult and supposed to be totally over the whole "what if ghosts are real" phase, i am not; for as long as i can think back i see shadows and hear sounds when i am awake that others dont see or hear.. i have cronic neck pain , as i love comedies; and laughter causes my head and sometimes upper body to go limp. i have on occasion been caught laughing while standing up and i will need to lean or bend over and catch myself on my own knees for support. 5 years ago i collapsed at a cousins funeral upon approaching the casket, i recieved a lot of embarrasing pity and i didnt dare explain because- for one- i had no idea what was going on and -two- i knew i was NOT having some pathetic scarlet o harrar moment. my husband on occasion during a dissagreement has had to catch me. several times in a day stress itself from being to tired to complete day to day tasks, cause these cataplectic attacks and though they are compairitively very mild , i loose a little balance and these attacks make me feel even more tired than before. whats more confusing to my family is that some days are good days. i occasionally dont have much difficulty and so therefore they assume i must of gotten plenty of rest and though they would never come out and say it, they doubt the existsance of narcolepsy or at least that i have it. i have 3 children and much of the time i am alseep on them and this is causing disruption in how they would and should have their afternoons go. i used to be a strong active person, though as long as i can rememebr i have fallen asleep at inapropriate moments, as a teen i used to get vitamin b shots at my mothers request from our family docor and was told i was lazy and could try to exibit some motivation that my lack of it was causing my mother stress..i had a phsycologist by the age of 14 because my mom thought i needed one because maybe i was bipolar! humiliatring and frightning then almost laughable now days. if i ever needed theapy it was to help me get through the way adults were treating me. i was often accused of smoking dope by adults around me and was subjected to several suprise urine tests, naturally i was sleepy, not high, so they didnt ever find anything except once mom gave me niquil at bed time for several weeks thinking if i slept better at night id be more awake during the day so the niquil showed up as some other drug that i almost didnt live down until our family doctor at least admitted that niquil was more likely the culprit given my age and that particular drug's availability in our community was nearly nill... . even so this narcolepsy has become worse and seems to be excelling or gaining momentum over the past 4 weeks and i feel as though i am sinking. i am a mentally sound person and have always held my own but this thing is stronger than i am and i feel daily more and more depressed than the week before. i keep going knowing that help is in my future and i wish all of you , those waiting for help, the strength to push on until these pompus doctors actually listen and begin to sympathise with you and and want to help you. those of you who have been diagnosed and still have trouble to you i wish for speedy relief. live every waking minute as though it is the most beautiful hour in existance. think of it as being happy to be awake and seize the moment with all the viggor left in your body. because we know we will pass out any minute now and miss something perhaps very interesting.( i missed the presedential race right before they announced bush as the winner and then as i am told gores conceeding and then the taking back of his conceeding ha ha) so when awake, devour the time with joy. peace to you all this season.
Hello! I hope that my connection is just bad tonite because getting to this response page took forever!
I have had Narcolepsy for about 10yrs now, and from the sound of it I have it to about the same degree as you do. We got the whole package--the cataplexy, hynogogic hallucination. sleep paralysis(sp), etc. Isn't that great! I am sorry, but I am sure that you can relate when I say that having this disorder tends to make one a little sacrastic.
I think that it is great that you have set up a page like the one you describe in your post, and I hope o visit there soon to post my own tales about what has happened to me.
I have come to realize that we are all we have. No one else can truly understand what it is to be narcoleptic, and it is theraputic for us to share our stories and chat with each other because we know that when we do we all understand exactly where the other is coming from.
I remember very cleary one night when I was in high school(it was in high school that my symptoms first started to appear), and I was at the movies. Although I do not remember the name of the movie, or even what the movie was about...in fact there is only one thing that stands out in my mind about that night. After the previews the screen went black, and a quote which I suppose was to set the theme for the movie appeared in red bold letters on the screen. The quote was this "Sleep. Those little slices of death, how I loath them." Edgar Allen Poe. I do not think that I will ever forget the image of that qoute in blood red letters on the movie screen, and I have often wonder since then if Mr. Poe was not in fact himself a narcolpetic.
Well, I guess that was a little story in and of itself! I did not plan to write this much! I do this a lot though when I get started talking about something I am passionate about I find it hard to stop...lol....:) If you think that this has a place on your site then you can feel free to post it there.
Thanx again for the site. I think that it will help us all to share what we have gone thru and learned since we developed this disorder. I will cya soon either in this discussion, or on your site! Take care! Chris Kauffman
Hi my name is Dana and almost all my life I have considered myself a a lazy person. I hardly ever have any energy and when I get home from work I'm totally wiped out. I absolutely have to take a nap when I get home. Even if I wake up feeling refreshed in the morning (rarely) by 9 or 10 am I am once again exhausted. I had trouble staying a wake in high school and took a 3rd period study hall just so I could take a nap. When I was 19 I worked as an insurance clerk and no matter how much coffee or "some pick me up pill" I took, I still fell a sleep at my computer. When I was 21 and pregnant with my son, I had a 20 min drive to and from work everyday. By afternoon I was so exhausted I wondered how I made it home ( I always joked that my car knew the way because I sure didn't remember driving). Since then I have just felt totally drained, like on the DARK CRYSTAL "where the bird is sucking the essences out of the little gelflings". That is how I feel nearly 80% of the time. I noticed that I can't sit and read a simple child's book to my son alot of the time because I fall asleep. He is always nudging me to wake back up and finish. He says I sleep too much. I have been battling with depression for the past few years and I have contributed my wanting to sleep as a side affect of the depression, but now I'm beginning to wonder if the the depression isn't a side affect of needing to sleep and not being able to function as I would like...just doing simple house chores when I come home from work. I am always telling my son "I'm too tired right now, maybe later". Now over the past 6 months at least, I am back to falling a sleep while driving home from work. I am a mammographer and on my feet most of the day, so at first I thought I was just tired from the day, but I can't control these episodes no matter how hard I try. I can tell it's happening, but can't stop it. I only live about 6 miles from work and it happens about 3-4 times in that 6 mph period. In the morning when I leave for work I feel like I'm in a trance of some sort. I know what I'm doing and my eyes are open, but it still feels like part of my brain is sleeping. This feeling usually last for 2-3 hours after I've gone to work. I sometimes can't remember if I've dropped my kid off at the babysitter, left him at home, or left him in the car in the mornings because I'm on such an autopilot mode. Sometimes I'll be working and it will all of a sudden come to mind and my heart skips a beat, and I have to think real hard about that mornings occurrances. I am now 29 years old and still unsure of what is wrong with me. But recently I have been reading alot about sleep disorders and I feel comfort in all the personal stories. I have been discussing the possibly of a sleep disorder with my doctor, but he wants me to go to psych. I told him that I have been told in the past that I have Major Depression. He thinks I might have bipolar type II because I have mood swings, but I am beginning to truly feel that I suffer from the depression and mood swings due to the feeling of overwhelming exhaustion. Thank you for listening to me. What do you think? Am I crazy or am I on the right track? Dana
I just viewed
your web site about narcolepsy and thought that I wouldshare some
of my experiences with this "thief of life illness!!"
I spent the winter of 1998 sleeping 18+ hrs per day with
incredible fatigue and weakness. I was having very vivid
dreams/nightmares that made me dread sleep or anything associated
with my bedroom!!! (sounds
crazy!!!) I would "act out" these dreams/nightmares
that on occasion were very dangerous activities. I should also
mention
that I have bipolar disorder and my doctors were all looking at
that as the problem. Med's changed month to month with no
results or relief. I was finally sent to a sleep specialist who
instantly understood my description of symptoms and I was soon in
a sleep lab. NARCOLEPSY with REM Behavior Disorder was the
diagnosis. I was put on clonazapam 1.5 mg
at bt to keep me from acting out the nightmares and it actually
lessened them!!! (RELIEF!!!!!!) For the narcolepsy, Provigil
was prescribed. I began at 200 mg in the am, but was soon
increased to 400 mg. Currently, I am finding a tolerance to the
drug and am very discouraged with my life right now. I have taken
my doctors advise to take short "power naps", but I
cannot
hear alarms, phones, etc. I later wake up 2 hrs.later. This is
very disruptive to every aspect of my life as I am sure
you are aware.
Any suggestions would be appreciated!!!! I long to be part of the
conscious world so badly!!!!
Hint: I had to undergo E.C.T. (electroconvulsive therapy)
approximately 6 years ago with 7 treatments total. It has been
suggested by my sleep doctor that this "head trauma"
could have induced the development of REM behavior disorder ,as
this
condition is prevalent in older people following a stroke, etc. I
am 34 yrs. old.
Thanks for listening to me!!!!
Sincerely,
Doug
douglasdirk@eurekanet.com
Melody, love the new site. It's even better than the last.
Since reading about your good luck with provigil I've decided to ask my doctor if I would be able to switch drugs. You wouldn't believe the weird looks i get when i tell people that i take ritalin and paxil. One is for the hyperactive and the other is mainly known for people with social anxiety disorder! What a combination. Actually i am hoping the provigil will help control my attacks better. The ritalin and paxil work for me, but the side effects are crazy. Insomnia tops my list immediately followed by muscle movement that i can't control and finally the shakes. I wish i could be a fly on the wall to hear what people say about me when i leave a room, you know? They must think i am one whacked out chica. Okay, that's about all....just thought it was time to check in again. I'll talk to you soon.....Jill
Hi, my name is Jill and I am 18 yrs. old. Recently i was diagnosed with cataplexy. I am so grateful for your web page. My friends don't quite understand what's wrong with me ( but then again, i'm not so sure i do either ) I was reading through everyone's stories and I almost felt like they were telling the story of my life. My syptoms only started about 3 months ago, but they are awful. I have so much to say, i almost don't know where to start. I'm really confused by all of this. I have those weird dreams where you know it's not real but you can't force yourself to wake up. I have the laughter spells where i fall to the ground because my legs feel like jello. I get these creepy tingly sensations, almost like i have electricity coursing through my body when i start dozing off. It's just plain scary. I was very lucky though. My doctor picked up cataplexy on my very first visit. She put me on Paxil and Ritalin for now to see if they can control my "episodes" as she calls them. I am very easily amused and spend a good amount of my time laughing at things that most others don't find funny. Due to this fact i was averaging anywhere between 8-12 episodes per day. They are so embarrassing. Cataplexy isn't a well known disorder, at least by the crowd of people I spend my time with. They just think i am being silly but really i can't control what is happening to me. The worst one was at my father's house. My little brother came off with a smart remark and it sent me into a laugh attack. I had to sit on the floor with my chin to my chest and fight with myself to keep myself from falling onto my side. My father was unaware at the time that i was having problems controlling my muscles and things like that, so he came off with some insensitive comment about how i need to stay away from bad drugs. Then i started crying. I tried to explain to him what brought it on and how it happens all the time, but he thought i was lying. As soon as i found out that the episodes i was having had a name, I called him and told him all about it. He said he never heard of it and he hardly believes that a sleeping disorder can cause all of the symptoms i described to him. Melody, you should have seen his face when i took him a copy of the page out of the medical journal that my doctor gave me. The look on my face was sheer triumph. I don't feel like a freak anymore. Granted, some people will always think that i am some staggering drunk, but the ones who mind don't matter and the ones that matter don't mind. Still and all, it's quite embarassing to fall face first in front of a bunch of strangers and not be able to get up. Okay, now i have some questions for you, if you don't mind that is. Will my medicine be able to control these attacks completely, or will i have them for the rest of my life? Does it get progressively worse? Maybe i should save these for my doctor. My mind is still reeling from the fact that there are other people out there who deal with the same thing I am dealing with. I love the stories that you post. They help me regain my self confidence, one piece at a time. Thank you so much for making this page. I don't feel so alone anymore! I was wondering if maybe you could connect me with other people who have cataplexy. I would love to chat with them and find out how they deal with it and what it's like for them. You can edit and post any of this if you wish, it doesn't matter to me. Thanks again, Jill ( Sylvia8781@aol.com )
Why did you stop
your poll categories at "5 or more" doctors before
diagnosis?
Let's see, spread over New York City, Philadelphia and Los
Angeles -- all where I desperately sought an answer about the
mysterious malady that
appeared out of nowhere:
4 Internists in NY (2), Philadelphia and LA;
2 Neurologists in Phil. & LA:
4 Psychiatrists;
2 Pain Management Specialists;
1 Sleep Disorder Specialist; and
2 Emergency Rooms
An educated man, in fact, a writer, I think I did pretty good job
of
describing what I now know as cataplexy and facial cataplexy to
each one.
In the end, I did my own diagnosis, thanks to the Internet.
What a
revelation it was on the day I read that my symptoms had names
and that taken together, they could describe only one disorder!
Sorry. Long-winded way of saying 14 or so doctors screwed it
up. I don't want to sue them; I just want to take an ear
off each and nail them to my
wall!
That's my Christmas wish.
Warm regards, Patrick - plveitch@fuse.net
my wife has narcolepsy and we recently found out that she is pregnant. Luckily for us (?I guess?), no drugs proved helpful in treating her narcolepsy and she has been off of all medications for close to a year (ie the baby will not be hurt by any drugs she was taking). In any case, I was just wondering if you have gone through prenancy with narcolepsy or if you know of any place we can find information on doing so. We refuse to take/try any new medications while she is pregnant, despite so-called experts telling us there is no risk to the baby. Yeah right. I do not see how being dosed up on 60-80mg of ritalin can possibly be good for a developing fetus. In any case, I was just wondering if you could give us any helpful hints on what we should due or if you know of a helpful website we could visit. Thanks, Robert Lee rlee@bsat.com - work email really24@aol.com - home emai
my daughter was just diag with narcolepsy after 2 years of tests she is a freshman at college a pre-med student she has always been a 4.0 student skipped a grade was active in you name it.until her jr.yr. at high school then she still managed to hang on but grades dropped and mentally she felt defeated no we know why but knowing why doesnt teach her how to get through this day to day problem and all the diff trys of meds.and how is she going to do this?she needs answers and someone who understands one of her prof says just sit in front of the class and you wont fall a sleep!!!she feels angree and just doent know how she is going to hang on to her dreams .her name is Ashley and her e-mail is hooliganzz@aol.com she goes to truman state university in mo. she rally needs to understand this beast as she calls it so she can have control again.thank you for listening we her family need educated to we love her so much and with her being far from home we are in indiana she cant utilize us .tanks again susie ashleys mom. Powermom83@aol.com
I was just
diagnosed last week with narcolepsy after going through not one
but two sleep studies and MSLT's.. I just went to my primary care
physician who then sent me to a neurologist. I have a mild
case of narcolepsy with severe sleep attacks. I am glad to
have FINALLY discovered that I am indeed fighting a medical
condition rather than trying to fight what others called
irresponsibility and laziness..
It seems that if I am not moving, I am asleep. I am scared
but excited to try to make it better but, I am finding there
isn't much to help me with this disease.
Is there any homeopathic treatments out there??
Trin RndvAngels7@aol.com
I am a retired senior citizen-68 years old- and I, too, so understand the stories I've just read. I was diagnosed at apprx. 20 yrs. old by a very good doctor . Fortunate for me because some doctors, even today, do not diagnose properly. I understand my case is mild but, at times, has been difficult for me. I have been on dexedrene spansules-10mg-for Many years-but it iiiiiiis the only thing that worked. As the laws changed, this controlled substance became harder to get--no refills, 2 months supply,etc. That's because the "druggies" abuse. I just ask my doctor for an RX to try provigil and have been on it 2 days. I don't believe it's going to work but I'm certainly going to try to stay with it. I raised 3 children, retired from a very good position and count myself lucky. I so feel for each of you--I, too, used to worry about rocking myself to sleep and dropping my babies. Thank God, it didn't happen. I always had to take a nap the minute I got home from work. God Bless all of you! Also, my best wishes for the employment disability case. I never told anyone at work that I even had it---but I did fall asleep sometimes. It should be covered under disability as it truly is disabling. My family members do show signs of the disease but not requiring medication---just lots of naps!
Hi,
I am 20 years old and am very afraid that I might have
narcolepsy. I am worried because first of all my mother has it,
and second I have experienced cataplexic experiences in the past.
I would be unable to control my body sometimes when I laughed and
my eyes would roll back, I would bob up and down until I
eventually fell. My mother remembers having similar experiences
like that in her childhood too. I don't have any problems staying
awake during the day, or falling asleep all of the sudden, but my
past cataplexic experiences and genes have me worried. I am not
asking for a diagnosis, I know that I will need to have a sleep
study to know for sure. I was just wondering if it was possible
to have past cataplexic experiences and not have narcolepsy. I
don't know if you know the answer to this question, but I thought
I would ask you, since I saw your website and you seem to know a
lot and have heard of a lot on the subject. Thank you for your
time.
Sincerely, Elizabeth Eliz217217@aol.com
Hello there, I
am writing about my husband.
He is 26 now ,and was diagnosed 5 years ago as having narcolepsy.
BUT before he was diagnosed he had been having sleeping attacks
all the time -well just basically sleeping from the time he got
home from work until the next morning when he had to leave for
work. We had two small children (2 years and 1 year), I had to
work swing shift which left "dad" with them for 4 hours
in the evening about 3-4 nights a week. He would tell me that he
was awake and just fine before I left, but many times I'd come
home and my babies wouldn't be there and he'd be asleep on the
couch. My mother or sister would call to check up on him, to make
sure he was still awake, and my 2 year old would answer the phone
so they would come get them and they couldn't even wake him up
when they got there. So anyone could have come in and taken them
and he wouldn't have even known. He was a jerk about it too. His
response would be that "I'm a man and I work all day long
and I can sleep any time I feel like it."
It didn't go over too well with me and the kids and I almost left
it was getting to be too much. He'd get mad if I left the kids
with my parents or sister because I couldn't trust him to stay
awake.
HIS whole bad attitude about it (too much sleeping) changed
drastically when he was on his way home from work and he fell
asleep driving and crossed 2 lanes and almost ran head on into a
semi. I guess that's what it took to get him to realize that it
wasn't normal.
Anyway he got tested and they said they had never seen a case as
bad as his and wanted to do a study on him that lasted a year but
he couldn't drive. Well since he was the main income there's no
way we could have done that, I'm not sure what they would have
gotten out of it anyway. He's been on every drug and combo they
have and still 5 years later it's getting worse.
He went back in for another study just last month and they did
comfirm that it was worse and that they didn't have anything else
to try. On top of it all, he as sleep apnea really bad as well.
They gave him a CPAP machine but he's more tired now than ever,
he has a hard enough time staying awake during work hours and all
he does at home now is sleep. We have 3 children now and they
even know that dad's not going to wake up if you tap on him or
shake him.
I hate it. I feel like a single parent with 4 children. He cant
even put his plate in the kitchen after he's done eating dinner
because he falls asleep sitting up. With the plate on his lap!!
It's hard on him too, because he feels "worthless"
because he doesn't get anything he wants to do accomplished,
aside from guarding the couch. Ü
He looks and feels like hell, and I don't know what to tell him.
The Dr. from what I know , has run out of options. He told my
husband that he was surprised that he wasn't dead yet, from the
readings of the tests.
I know I've rambled but do you know what the end product of all
of this is? Does it just get worse with age? I know there's no
cure, but something has to help.
I have the opposite problem that I can't sleep, so him snoring
and that machine drive me nuts!! I can't usually get to sleep
until about 3-4 in the morning, after pacing the halls and
listening to him for hours on end.
And our son has had night terrors since he was 18months old- he's
now 7, they don't happen every night any more, they just happen
in spurts. He'll have one every night for a week or a couple
times a week for a month or two, then none for 3-6 month.
??????????
So now I am rambling............ If you have ANY info that could
help I'd really appreciate it.
Thanks for listening (reading) Gloria - GloLynn3@aol.com
Hello, My name is Kelly. i am a 26 year old female and was diagnosed with narcolepsy when i was19 years old. I can recall having symptoms of narcolespy throughout my highschool experience. My medical doctors always told me that my iron was low and that was why I was always sleepy. My narcolepsy was diagnosed after experiencing a cataplexic attack when I was a freshman in college. Medical officials at my college thought that I had experienced a petite mal seizure and ordered a sleep study to rule this out. After discovering I had narcolepsyI was relieved but frightened. For years, I was poorly educated about and treated for narcolepsy. I was ashamed of the symptoms and resented the sleep that tormented my life. My difficulties memorizing new information, constant repetitive yawning, blood shot eyes, disorganization, blurred vision, and poor attention were interfereing with my academic and social life. During graduate school I was misunderstood as being forgetful, disorganized, lazy, and disinterested. By the grace of God I made it thorugh. I currently control my narcolepsy with Provigil. This drug has changed my life. Although I still have some symptoms of narcolepsy while using it, I feel much more confident about myself. I have recently gotten married and am experiencing difficulties with my labido. I love my husband and believe that he is very sexy- but my sex drive is awful. This hurts me and though he says he understands, I know that it bothers him. We want to start a family soon, and I am afraid. I am afraid that the narcolespy will interfere with my alertness during the pregnancy and afterwards. ( Will I hear the baby cry at night?- will I have enough energy to play with my child?) I don't want to use my medication during my pregnancy because I fear that it may harm my baby. So inadvertantly this means that I may not be able to work- (because without my medication I can not drive safely and perform my job as a rehab therapist). I would love to hear from someone who understands my pain and fears. Has anyone out there taken provigil while pregnant? What is it like to be off of the medicine during the pregnancy? Can you hear your baby cry at night? I hope that someone out there can share their expriences with me. Kelly - Keleric@aol.com