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| Linda | William | Kelly (2) | Crystal | Judy |
HI! My name is Linda. I am soon to be 44 yrs old, and I have had Narcolepsy for probably about 10 years but was not diagnosed until about 5 months ago. Though I have at times suffered from many of the other symptoms of narcolepsy the main symptom I suffer from is the excessive daytime sleepiness. Unless you have personally suffered from this it isunlikely that that you will understand the extreme negative effect it has on a person's life. I am surprised that I don't suffer from depression since this illness practically destroys a person's life. But fortunately somehow I am able to keep an optimistic attitude even though it is a constant struggle to cope and seems like a nightmare that never ends. I take 5mg of Ritalin 3 times a day, the morning and afternoon dose helps me feel alert and cope most of the time, but my evening dose doesn't even seem to help at all. Provigil did not work for me at all, it made me extremely tense. My older sister was also diagnosed with narcolepsy about a year before I was diagnosed. Her symptoms are much more extreme then mine, probably because she is about ten years older and at a more advanced stage of this illness. Out of 5 sisters and 4 brothers she and I are the only 2 that have displayed symptoms of this disease as of now. Our 73 yr old mother who passed away recently went to her grave with extreme concern for my sister and I, unlike most people she seemed to understand how serious this was effecting our lives and she was very sympathetic towards both of us. She and I had tried to figure out if other from our family(ancestors,etc...) may have had narcolepsy but we could not think of any who had. There isn't a single aspect of my life that this illness hasn't had a negative effect on. Ordinary tasks seem impossible to accomplish when you're excessively sleepy. The most disappointing thing about this is that I can't live up to other peoples expectations no matter how much I may want to. People misunderstand and label me as lazy. As bittersweet as it seems it does help to know that there are others who unfortunately understand all to well at how narcolepsy effects me because they too suffer from this debilitating disorder. Thank you so much for giving people like myself the opportunity to voice ourselves on this important matter. You have my permission to submit this if you would like to, but if not that is fine. Thank you so much! LInda
i have
narcolepsy with major cataplexy. Have had this for over thirity
years. i am now taking effexor xr cap 75mg.so for it has stoped
the ataplexies. three a day, morning, noon, nite.
orphan medical is now working on a med., that is a liquid and is
said to be great. it should be approved this may. ask your doctor
about it. to find more about it contacy orphan medicalin mpls
minnesota. ask for patti engel she is vice president.
if you cant find them try Narcolepsy network 10921 reed hartman
hwy, suite 119 cincinnati oh 45242 phone 513 891-3522, fax 513
891 3836, e mail:narnet@ aol.com website: www.narcolepsynetwork.
org if all of you out thier would like to find out more abouy
narcolepsy i suggest you join narcolepsy network it cost twenty
five dollars a year, but believe me it is well worth it good luck
to all.
Bob Grand Junction Co.
hi my name is bet i was dignoised with narcolepsy cataplexy oct 2000 i take my meds but it seems they will help out a week or so then i start right back where i started from i fall down allot even when im sitting in a chair i do allot of floating arround my hands shake sometimes i cannt move my hands arms or legs my family is wonderful but i find going out of my home to be very difficult so i just stay in the house i use to be very acctive thanks for listening bet
BetnTN98@aol.com
hi my name is
Suzanne. i have been diagnosed with narcolepsy since 1997.
i have suffered from what i refer to as the "lazy,
crazy, stupids" as far back as i can remember. it
seemed to get worse after i almost died from nephritis in 1985.
i had run a fever of 106.7. looking back at my family
i believe from stories i have heard that my great grandfather on
my father's side had a severe case. my father, both
brothers, and sister all have been known as late risers all our
lives. in my case when left unattended i just don't wake
up. i have slept over 24 hours straight through and still
wake up feeling exhausted and ready to go back to sleep. i
am known as unreliable, selfish, uncommitted, and aimless.
i have pretty much meandered through the full 33 years of
my life. I absolutely hate birthdays because it is just
another reminder of another year of life wasted and lost.
of course there is always that "Polly sunshine"
that tells me to just hop up and snap to. quit feeling
sorry for myself. my mother's explanation is that i have my
days and nights mixed up. she says just to hop out of bed
and make myself get up. i really hate using this analogy,
but would you tell that to a quadriplegic. there are times
when I absolutely cannot move anything. When drifting off
to sleep or when first waking it takes awhile for me to get full
capabilities of motor skills and even the ability to speak.
So how am I gonna just hop up, bright eyed and bushy
tailed.
I have tried all the treatments. Dexedrine, antidepressants
(lots of those, doctors kept trying to treat me for clinical
depression), adderall, ritalin, cylert, prodigal. For the
last year I have been taking 400 mgs of provigil daily and 60 mgs
of adderall daily. the side effects from these aren't as
bad as other drug therapies in past but believe me they do have
their downsides. Not only am i irritable as hell but my
once beautiful skin is pock marked and scarred from the breakouts
that the drugs cause. so i have the issue of being ugly as
well as narcoleptic to deal with. i am getting where i
don't like leaving the house. i am afraid of people looking
at my ugly face or that i am gonna have an attack somewhere.
you would have never guessed it but my self esteem has
really suffered due to this disorder. i don't like being
around people. i have gone through 2 divorces. i am a
failure as a mother. and i rarely talk to my family.
the last visit i had with my parents ended in disaster.
my mother thinks that i am a drug addict and thinks i
should totally quit all my meds which i tried i might add.
so due to non-functionability I am now without a job.
So what do I do now. I have no money, no savings, no
nothing. I really would like to go to school so I could
have some kind of vocation and be able to be self employed, 9 to
5 is virtually impossible. But in order to do that and be
able to make ends meet i have to work a full time job and go to
school at same time and care for my child. i am sorry to
have written such a ridiculous letter to you, but i guess i
needed to vent my frustrations thanks for the space to do that.
i keep trying to tell myself to "cowboy up" and
get tough. i just don't have it anymore. i am so
tired. i am tired of being sick and tired. i am not
suicidal, thank God for small favors, but i am just tired of
living this way. i want to be normal. supposedly the
medications i am on are supposed to enable me to lead normal and
productive life. i am anything but that. i am not an
active or productive member of the human race. I am taking
up valuable space and oxygen.
If you have any suggestions whatsoever please feel free to let me
know. Otherwise I appreciate the vent space.
Suzanne - Queenaevadamthng@aol.com
Hello Melody,
I am writing you with questions regarding cataplexy. I am
now 87 years old and have had this condition since boyhood
(although not diagnosed).
My main question or concern is: Does this condition get
progressively worse?
I laugh or whatever and get so weak I can barely stand up.
I am taking the new medicine, Provigil, which seems to help with
the sleep attacks but not the "seizure" style episodes.
What if anything can you tell me that I can transmit to my doctor
to help avoid these attacks or minimize them? As an Elder
Citizen, I am afraid a "seizure" could cause me to
completely fall and this is dangerous for an Oldie.
Thank you for any assistance or information you can
provide. By all means, you have my permission to put this
on the Web.
William Sandy WSHILLVIEW@aol.com
THIS IS A WONDERFUL SITE. MY HUSBAND WAS DIAGNOSED ABOUT A YEAR AGO. UP UNTIL THAT POINT IT WAS TRYING ON OUR MARRIAGE UNTIL I STARTED READING UP ON SLEEP DISORDERS. I THOUGH HE WAS JUST BEING A JERK. ITS NICE TO READ ABOUT THE EFFECTS THAT OTHER PEOPLE HAVE. NOW THAT I READ THEM I CAN SEE SOME OF THE SAME PROBLEMS IN MY HUSBAND. THE DR WE HAVE IS ALRIGHT BUT NOT REAL TALKATIVE ABOUT WHAT CAN HAPPEN. I FIND IT INTERESTING HOW THE TERRIFYING DREAMS COME INTO PLAY. HE HAS THEM REAL BAD. THE DR PUT HIM ON PROTRYPTLYN BUT HE HAD AWFUL AGRESSIVE SIDE EFFECTS TO THAT ONE. HE IS NOW JUST TAKING THE PROVOGIL BUT IT DOESNT ALWAYS SEEM TO WORK HE ISNT IN A REAL HURRY TO DO ANYTHING ABOUT IT THOUGH. THE DRIVING WORRIES ME THOUGH. IT ALWAYS HAS. IN A MATTER OF 4SEC HE CAN BE ASLEEP AND NOT EVEN KNOW IT. WE HAVE TRIED NO CARBS AND SUGAR BUT THAT DIDNT REAL SHOW ANY BIG DIFFERENCE EITHER ANY SUGGESTIONS LET ME KNOW. CRHAPPYHOUSE@cs.com
Dear Melody,
I am glad I found your website. I have been feeling alone in
coping with my narcolepsy for years I would like to share my
story with the others.
Hello everyone,
My name is Dawn. I was diagnosed a narcoleptic at age 11 (I'm now
25). I have a lot to tell so please hang with me I'll try to keep
it interesting. My symptoms started when I was about three. At
every age there are pictures of me sleeping. There are huge gaps
of my life that are memories of dreams I had (mostly nightmares)
instead of actual memories. From ages 9-11 I experienced the
worst symptoms I can remember. I would literally come home from
school and pass out. I would sleep from that time till my Mom
woke me up for supper then I would go back to sleep until school
the next day. Needless to say my mother was terrified. I was in
and out of Dr.'s offices frequently. The only thing that they
could come up with was a lower than average iron count which in
no way explained the severity of the symptoms. Today I went to
the hospital that my sleep study was conducted at to see my
records. I was blown away.. I hadn't seen them since I was 11 and
didn't really understand them then. Average sleep latency in . 05
minutes. Average REM latency in 2.4 minutes.Thats out of 4 naps
none exceeding 12 minutes with dreams in all four! The shortest
nap was 4 minutes. Sleep latency 0 min !!! REM 1 min. !!! No
level 1 or 3/4 sleep. With two reported dreams. WOW!!
Even though my condition was explained in great length to all of
teachers after the study none of them would recognize my
condition. They put me through hell and I wish I could have slept
straight through middle and high school. There was much
speculation by my teachers and extended family that I was a drug
addict and stayed up parting all night. Countless times my
teachers would let me sleep through a class and when I would wake
up (usually drooling) in the next class the teachers would throw
the first stone in making fun of me. It got so bad I quit school
at age 16. Since then I've been hopping from job to job. Ashamed
at first hand accounts by friends and co workers of the things I
have said and done while in automatic zombie mode. The longest
job I've been able to hold (3 Years) was ---guess--- a coffee
shop.
Luckily I have a twisted sense of humor and a mild temperament so
my cataplexic attacks are minimal yet still embarrassing as hell.
Anyway the reason I have become so interested lately in my
narcolepsy is I would like to grow up now. I'm not to fond of
medications so I'd like to be self employeed eventually. That
means school ... I'm scared as hell. I have taken a few classes
since I got my GEED and done well. College professors tended to
be a lot more understanding and accommodating to my condition.
But full time school AND job hopping? How did any narcoleptic
ever do it? I've been considering disability. Are many of you on
disability? I would like to get a more current sleep study but I
don't have insurance. I really appreciate anyone who actually
spent the time to read all of this. Future letters will be
shorter. Please e-mail me if ya wanna talk. I would love to hear
more of your stories and suggestions.
hangrenade@altavista.com
-Dawn
I have read what you said about narcolepsy and I also have the foursyndroms. My cataplexy is the worst problem now.I am retired so the EDSis not such a problem. The night mares don't bother me as much now but they were horrible when I used to have them. Knives come up through the bed , some one coming the room to kill me. Bears trying to crawl in my window.....I thought I was going insane until I finally met a doctor who told me what I had. It started in grade ten in high school and got so bad I had to leave. I couldn't stay awake in class. But I am 72 now and though my life was not the best I got through it. My heart goes out to young people who have it now and will never be able to drive or get a proper education. The worst part I guess was first not knowing what I had and then all the drugs that doctors kept throwing at me. And they are still trying to tell me there is a cure. I don't trust doctors any more which is a shame. There must be one or two some where in the world .
A sleepy Canadian
HI, MY NAME IS
KELLY I AM 35 YEAR OLD MOTHER OF THREE BOYS. I JUST RECENTLY
FOUND THIS SITE AND SO THANKFUL OF IT. IT HAS HELP ME TO REALIZE
THAT I AM NOT ALONE AND MAY OFFER A GLIMMER OF HOPE THAT MAYBE
SOMEDAY I WILL FUNCTION BETTER THROUGHOUT THE DAY. FOR AS LONG AS
I CAN REMEMBER I HAVE ALWAYS BEEN TIRED. WHEN I WAS I KID I WAS
CALLED SLEEPY HEAD AND THE OLDER I GOT THE MORE IT DROVE EVERYONE
CRAZY IN MY FAMILY.THEY WOULD REALLY GET ON ME FOR IT. AND I
THOUGHT I AM REALLY TIRED. I COULD NEVER KEEP GOOD ATTENDCE AT
ANY JOB I HAD BECAUSE I WAS TIRED AND JUST STAYED HOME TO SLEEP
AGAIN EVERYONE GOT ON ME TOLD ME I WAS LAZY. WHEN I MARRIED AND
HAD KIDS EVERYONE GOT ON ME ABOUT THE WAY I KEPT HOUSE AND DIDN'T
WANT TO WORK. NO ONE UNDERSTANDS I AM SLEEPY AND IF I WASN'T I
WOULDN'T SLEEP.
THIS SITE AS HELP ME TO BELIEVE MYSELF
"I AM SLEEPY" AND THERES NOTHING I CAN DO FOR NOW.
I GO FOR MY SLEEP STUDY TONIGHT AND VERY
EXCITED ABOUT IT. EVEN THOUGH THERE IS NO CURE. THERE IS A NAME I
CAN PUT WITH IT AND FEEL BETTER ABOUT MYSELF.
THANKS AGAIN KELLY
P.S. IF THERE ANYONE WHO COULD OFFER ANYTHING TO HELP ME WITH
THIS PLEASE E-MAIL ME AT: MAMAOFBOYS3@AOL.COM
Hi Melody,
I am a 28 yr old male and first started experiencing the symptoms of narcolepsy about 4 years ago, during a 7 month work stint on a yacht cruising in the Mediterranean. During my time on board, I was made to do "watches" at odd shifts during the night.
I was often woken up quite suddenly and felt that I had to be alert at a moment's notice.
After a week at sea I found that I could quite easily nod-off in the day time, often while standing up. The first time it happened, I was quite shocked, but then it became routine and I found myself dozing-off all the time.
After my time on the boat, I travelled to the states to visit my brother in SF. Both him and his wife started to notice that I was continually dozing off in the car, while they were trying to show me all the sights and beautiful scenery. As you can imagine, this became quite embarrassing.
After returning to the UK, I started to notice that my sleeping pattern had changed from being a good/late sleeper, to beng an early riser, with continual night-time awakenings. I also started experiencing night-time panic attacks, where literally seconds from dozing off, I would become paralysed and terrified, while always managing to scream out the name of the nearest person in the house. It would always creep up on me in the same way and I started to think that I had become an alien abductee, or that something was trying to suffocate me. I could feel the onset of an attack, where the paralysis would spread over me in a wave and I would often get a loud buzzing in my head. I always felt liken the experience to being "vacuum packed" by the duvet!
I also during that time started to experiment with drugs, as a way of avoiding the nightmares on the weekends. Usually this involved clubbing sessions with ecstasy that would often go on for 24hrs or where I would be out till 7am and then sleep the whole day. During this period, I started having sleep attacks at work, which I delat with by having short naps in the toilets.
My "sleep attacks" were usually quite controlled, but they are accompanied by extremely bloodshot eyes,and a lack of visual focus. At first I used to think that I had developed some sort of food allergy, so I tried skipping lunch and only ate a sandwich at around 4PM. I also started going to gym 3 times a week, hoping that improving my fitness woud help, but found that instead of refreshing me, it was making me feel worse.
Unfortunately my job involves accountancy, which is by no means the most suitable work for a narcoleptic. I also tried studying last year, but after a 9 hour day in the office I kept falling asleep in class, even when I used to move to the front.
Recently I visited a few GP's to gain a professional opinion, but one of them declared that I was "just depressed" and should start a course of Prozac. The next one said that I should change my career (I just wanted immediate relief from the sleepiness) I also saw one GP who found that I had traces of the Epstein Barr virus in my blood (ME) . I still could not see how this could have been giving me the nightmares and panic attacks for two years. After numerous other blood & fitness tests, I decide to take matters into my own hands and do a bit of my own research, especially since about 8 months ago I started developing the symptoms of cataplexy. This just occurred for no reason one day, when one of my friends cracked a joke, which made my knees go all floppy. I also experienced sagging facial muscles and trembling mouth. Fortunately, it takes quite alot to make me laugh (I have a very dry sense of humour).
This is starting to become a worry for me, as I am now wondering if I can ever allow myself to feel strongly emotional again. Not sure how I will cope with being angry. The cataplexy is made worse by weekend drinking binges and when I am tired and run down. Also, I have managed to pass out while walking home from a pub at night. Fortunately I am usually accompanied by friends, who know what to look out for.
Unfortunately my problem is aggravated by my high pressure lifestyle and I do worry about whether or not I will be able to carry on working in my 30's, or whether I will cope with a family. I feel that my narcolepsy has given rise to a whole host of related psychological problems for me, including a complete lack of self-confidence, negativity, self-loathing and paranoia at work, because I am so worried that people might notice that I have dozed off at my desk. I also have to say that my love life and especially my sex life is suffering. From being a sex four-times-a-night person, I find that I only have the libido for once, maybe twice a week, which has not made previous relationships easy to sustain. Falling asleep after sex is bad enough, but try falling asleep during the act!
After reading much of the on-line info, I started taking 1500ug of St John's Wort each day, first thing every morning. I am now in my second week of self-medication and I have to say that it has reduced my sleep attacks from 6 daily to about 4, while it has also raised my overall alertness at work. I am now going to try out L-Tyrosene, (which is supposed to elevate dopamine/seratonin levels) from next week. Unfortunately this is not doing enough for me.
Must say that I am really excited about tomorrow, as I have booked an appointment with a Neurologist, who will hopefully be able to make a diagnosis and give me a bit of advice. Maybe I will get to try out Providgil, which sounds like it could improve things.
Anyway thanks for listening and feel free to reply with your thoughts and comments.
Regards, Matt
Hi Melody--I've just been reading your website. Wow, what stories. You are a saint to give people this chance to "vent." And thank you for the education. I have obstructive sleep apnea and "central apnea" which is apnea not caused by obstruction but by some defect in the neuro system. I am on BIPAP, but still get sleepy/tired during the day. (For those unitiated, BIPAP/CPAP is a machine that blows air down your throat through a nasal mask, to keep your airway open so you don't stop breathing--which I used to do). I also had an MSLT or MLST ? but they said I did not have narcolepsy. BUT, I wonder. Give me a book to read, or my old job, typing doctor reports and I will be asleep in 30 minutes or less! This symptom, combined with hypnogogic hallucinations, which the doctor educated me on, and which are very, very scary, really make me think about narcolepsy.
I have one other sensation I would like to check with you. There are times (very short) when I am just falling asleep or waking up, when I feel like I am falling--I actually grab the bed with both hands and it wakes me up, I realize I did not fall and I go on to sleep or get up! Have you or anyone out there ever experienced this? You know I am sure--we don't feel free to talk to our doctors about all these symptoms because we have been ignored so many times, or given ridiculous reasons why these things happen! But, this is not the hallucinations. I also have those "dreams" and they scare the ______ out of you, they seem so real!
I can't say I have experienced cataplexy. I have had times when I experienced uncontrollable laughter or burst into tears, could not control, just let it go till over. One time my husband and I were riding down the road and a local Church was on fire. I looked at the flames and burst into tears and was so fearful feeling! My husband I remember, was shocked--it was not our Church, we were not involved. I couldn't explain it to him or myself. Anyway, I have other problems so who knows?? I take Dilantin to control seizures, which no reason for has been found. Recently I have been told I have fibromyalgia and depression. I talk Effexor for that, really seems to help the depression. The Fmalgia--well those pains and aches, and "fibro-fog" (memory burnout) you just deal with--I take Motrin and Thank You God, my husband and friends are just accepting and understanding. (Don't think my family takes me seriously tho). Frustrating when folks look sideways at you Huh?
Blessings to everyone--hang in folks, pray and laugh a lot every day--it helps! Sylvia
Hi my name is Bridget and I was just recently in the past week diagnosed with narcolepsy. It all started when I would fall asleep in class when I was in highschool. I was a cheerleader, and during stretching, whenever we would do floor exersizes, I would fall asleep. Everyone would laugh and make comments. I was embarassed! It happened all the time, and at home I would sleep alot, but never thought twice about it. When I was a senior in highschool, everything was the same except I started falling asleep behind the wheel during the day. Following highschool I would fall asleep during college class, it was hard for me to get up for class, even though I would sleep for almost 10 or more hours a day. Next, (As I know now I was having episodes of cataplexy). It seemed to happen when I would encounter strong emotion or laughter. My knees would slowly give and my head would bob, my eyes would roll, sometimes I couldn't control my mouth and my head would be hanging and I would be drewling, I couldn't say anything, or grasp anything, I was basically partially paralized. My best friend would call it "Drunk Laugh", she thought I looked drunk. To everyone it was funny. I would fall in the middle of the store, and there is no telling when it will stop. The only way that I feel that I come out of it faster if everyone keeps quiet and doesn't say anything. When someone laughs, or says are you alright, it interferes, and the episode lasts even longer. It got to the point where I would lose all power to stand up, my knees would buckle and I was on the ground. So, the most recent thing that started happening was I have a hard time focusing on the TV, my face becomes pinned to the pillow and my vision is very blurry. The only problem I had was not realizing time ago that there was something wrong. My parents never seen it happen, because I was a teenager, I hardly ever spent time at home, I would make comments about it but we never realized until I got really scared b/c I constantly fell asleep behind the wheel and the episodes where getting worse and they were happening one after another. I went to a sleep study specialist, on the spot he knew I had narcolepsy, I had a sleep study and it confirmed it. It interferes with my life, not only is it embarassing, but it takes over everything you do. Today, is my first day of taking Provigil, I was kind of nervous because of all the different effects, some say it works good, some have said it has done nothing but give them side effects.? All I need right now is some reassurance from others who have taken it. e-mail me at BMZDESIGN@aol.com. Thanks
Thank you for the much need info I wasn't sure there was many people out there to talk to. Today is Saturday and on Thursday I had a very strong sleep attack. Someone at work come up behind me on popped a bag behind me and scared me to death of course I played it off but by the next break I was falling a sleep at my job. I have to push furniture all day. I think from reading all of the pages that I may have some light phases of C in my life such as weak knees and a heaviness in my limbs at times and my dreams almost come a live most of the time scaring me a wake. I still don't know what to expect for the rest of my life.
Crystal
Thank you for the help that you have given me. It has helped me a great deal just to know that there is other people that has maybe the same problems that I have. I am not alone in this world no matter how many times I have read that there is so many about. To have someone real to talk with.
Crystal
Hey it's Crystal!
I am feeling better about N. Knowing is half the battle. Maybe once my dx has come in the ending will be starting you know the part that you get to live again. My life will never be the same as before but I really can't remember what that really felt like. I had to go to the doctor to day I found out that I have a bone spur on my heel (makes it very hard to walk all day). Don't know what med.s they will put me on for that. You may put this e-mail in the post and the ones from before.
Hopefully a new friend Crystal
Dear Melody,
I had the test yesterday and went to see the doctor about the headachess I was having. He had a very early dx for me. He siad that there wasn't anything outstanding to report at this time. He also told me that even if it was to show up that he wasn't going to put me on any medication due to me tring to get pregant. He also siad that if this didn't show anything that he really didn't know what was making me so tried. Calling himself an idiot in the process. I have to go back to him in three months and have to call him next week for the test results. The only thing is that I don't know how to deal with with not know what is exaclty wrong with me. Have any sugestions for me?
Durning the test I couldn't go to sleep I guess with the change of envoment it helped me to stay more awake. Did you have this test done? I noticed one thing that I did dream while still awake.
Thank You,
Crystal
Dear Melody: Since I no dx to fall back on (no N or apnea or anything else) I not sure how to cope with all of this excessive sleepiness. Just today I just about fell asleep driving my daughter to daycare and then on my way to work and then again after seeing the foot doctor. Driving is the absolute worst time for me. I don't know if it is the lights from the on coming cars in the morning and the sun in the afternoon or if it is something else all together. The doc says that there isn't any other tests to take and that nothing else can be done. That in it's self is enough to make a person crazy when I thought it was N I had a fighting chance but now I just don't know any more. I guess I will try to adjust m life to fit into it better. My husband is also up in the air as to what to do and how to treat me. Do you know of anything out there that might be close to what I may have? I know what my dad will be saying once I tell him it isn't N "I told you it was your weight all you need to do is lose some of it." Well, that will be all the trouble I will put at your doorstep to day. I will let you go. Crystal
hi my name is
debbie. i am from killen alabama. i was diagnosed with narcolepsy
just last month. i also have chronic asthma . i have 3 diabetes
in my family who is on insulin and i was told i had severe
depression. i have been treated for depression now since january
2000. i currently take 40 mg of prozac once daily and 150 mg of
wellbutrin 2 times a day as well as adderall 2 times a day. i did
a little research on narcolepsy and found out that it was
misdiagnosed as depression almost always. i wonder if that
happened to me. i feel tired and run down all the time. i feel
like i can never get enough rest. the adderall has helped a
little but the doctor wants to give a little more time.
i also found out that it is a disability under the americans with
disabilities act.
i laso had back surgery march 2000.
i am uncertain about narcolepsy and the effects it has on people
and the people who live with you.
if you have any research pages please let me know. i feel all
alone like no one understands what is wrong with me after all how
can they understand if i do not.
Hotrodmoma84@aol.com
This is an email I received from Ernie, a man whose experiences with narcolepsy began over 40 years ago. I expect to hear a lot more from him in the future:
Hi Melody,
It's funny that you should mention that we are both horror movie fans, on the same day that I read about your comedy and Cataplexy problem.When I was a little kid,horror movies(even watching Twilight Zone on TV) used to make me absolutely numb.I grew up thinking I was just "chicken".Later on,I came to realize that I had an unnatural reaction to being startled. I was really fascinated by horror films but always avoided them because I didn't want anyone to see me going numb and shaking like that. As a young adult,it bothered me so badly(can't have your date thinking you're a wuss) that I intentionally sat down and forced myself to watch the most graphic films I could find.The idea was to desensitize myself to that dreaded startle reaction.It worked,for the most part,with movies. It didn't really work for other situations,though. If I would see something out of the ordinary,I still had to deal with the startle reaction.For instance,if a elevator door would open and there was someone in a wheelchair or missing a limb,my knees would buckle and my speech would slur. Later, I dicovered that if I was standing and having an emotionally charged conversation,I would (without realizing) lean against a wall or a door jam to maintain my balance.I spent thirty six years not being able to identify what was ruining my life. The problem started in the first grade.I was sent to a Catholic school. It was a very strict environment.NO NONSENSE TOLERATED! One day, during an automatic behavior episode,the nun noticed that I was using an imaginary gun to shoot at something outside the window. My older sister was called out of class and told to inform my mother of this. The nun also called my mother on a regular basis to make other similar reports.As far as I was concerned,the old bag was making up stories about me.THOU SHALT NOT BEAR FALSE WITNESS AGAINST THY NEIGHBOR.The whole thing sounded like bullshit.The nun kept harping on me about not getting enough sleep and watching too much TV. She kept on nagging my mother about getting! medical attention for her weird kid. I spent much of my childhood feeling like a lab rat. Well,Mel, that's the first installment.How'm I doing? The next episode is rated PG-13 because it features violence and a beating to the point of unconciousness. ERNIE
True to his word, this is Ernies next installment:
Hi Melody, I hope you had a nice Memorial Day weekend. Y'know if we DID make a movie for TV,no one would believe us(too far fetched). The years after first grade varied in the amount of abuse I was subjected to. Second grade wasn't too bad except I still kept being told by a nun that I should go to bed at 7:30 instead of 8:30.I was also told that I should watch no more than 30 minutes a day of TV.I was also told to be more selective about WHAT I watched.The nun suggested that I watch Popeye.Now I'll bet THAT'S conducive to calm non-violent behavior!!!!!!! Third grade was pretty bland.Things got very interesting in the fourth grade,though.The class was taught by a psychotic old nun whose last assignment was teaching high school seniors.She noticed that I was a little different.Then she told me I was posessed by the devil.I think that was her reason for beating the devil out of me.Over an entire school year,she beat me almost every day.She told me if I told my parents,I'd get it even worse.My mind was so scrambled that one day while doing "penance" for my sins,I mutilated my thumbnails with a double edged razor blade.They never grew back properly and it still makes me cringe when someone mentions it.One day,my mother sent a note to the nun explaining why my homework was incomplete.The old bag tore op the note and told me to get back to my desk.When I turned around,she struck me at the base of the skull,with enough force to make me lose conciousness.When I came to ,she was telling the rest of the class that anyone who reported what he saw,would be next.On the last day of school that year,she commited her last act of abuse on me.We were supposed to attend Mass that morning and then go up to our classroom to get our report cards, and then go home for the summer.We had seating assignments,so we had to sit in the same place everyday.When I went into the classroom,I discovered that my desk had been moved and a smaller desk had been put in it's place.The little desk was covered with dried vomit(even the book cavity ! on the bottom).While every other kid was on his way home for summer vacation,I was issued a bucket and a sponge ,and made to stay until the desk was spotless.The following year she was gone amid rumors that she was sent to a mental institution.I'll never know for sure. Melody,--- remember feel embarassed?I understand-----I really do understand. ERNIE -Will talk more in a moment.
Chapter Three from Ernie:
The most important perception in your life is your perception YOU. How you see yourself determines how you act and react. This,in return, influences how others perceive you. Narcoleptics very often have a bad self image. When others treat you like a freak, and do it for long enough,it gets to a point where the only pride you have left is in BEING a freak. If a person is told that he/she is other than, or less than he/she is,and is told this for a long enough time, eventually he/she will buy into it. From the age of nine until the age of fourteen, my life seemed like a twisted plot from some comic book.Grades five, six, and seven saw me whisked off to doctors for various ticks, flinches, and other such "bad habits". In my mind, I was still recoiling from beatings in the fourth grade. By the time I made it to the eighth grade, a large number of my schoolmates, taking their cue from teachers of past years,decided that I was not "normal". For the entire eighth grade school year, a gang of kids from my school made every day of my life a new experience. They weren't content with name calling or knocking my books on the floor.They became very innovative.They used a jack knife, heated up against a spinning bicycle tire,to burn me.They cut, poked and stabbed me with everything from a straight pin, to a fountain pen tip, to the point of a drawing compass.The scars are still on my back, but they're nothing compared to the scars elsewhere.The body heals much faster than the spirit. I started to emerge from the tunnel (or so I thought) when I entered the ninth grade, at a public school in another city.I made new friends in a new place. No one knew about my past. I finally started to realize that what had happened to me wasn't my fault. Up until that year, all I really wanted was death.I used to do dangerous things, including jumping from high places and going up on the tops of buildings, and walking on narrow ledges.It was a classic "Catch-22" situation. As a Catholic, I had been taught that suicide was a Mortal Sin, ! and a rapid transit to Hell. On the other hand,if I should just happen to fall,THAT would be an accident.I would therefore, not go from a temporary Hell on Earth, to the permanent real thing. It's funny how many years it takes to UNlearn all of the crap that gets put into your head when you're a little kid. Even after life began to (at last) make sense, I still didn't know why I had been considered a freak all those years. I didn't get diagnosed with Narcolepsy until I was 42. You might think that after writing so much negative information, that I don't have anything good to say about anyone or anything. If not for the occasional kind word or bit of humor, I might have become another Ted Bundy or Jeffrey Dahmer.(Every time I make a statement like that, my wife tells me that I have a "flair for the dramatic"). There does seem to be a good deal of evidence to suggest that people with violent tendencies have had traumatic childhoods. By age fourteen, I started looking for answers. What makes people do rotten things to other people? Sometimes it's a matter of money and power. Sometimes, it's fear. "Fear of what"?,you ask. Let me illustrate the point by telling you about a man I saw on a TV talk show about 30 years ago. The man was a former member of a radical organization, who had been sent to prison in the late 60's. At various times, he was kicked and beaten, and thrown into something called a P.C.(punishment cell). In the P.C., there was neither room to stand nor lie down. The cell was dark, and the floor was covered with raw sewage. The interviewer asked the former prisoner how he had kept his sanity. He replied, "You have to realize the mentality of the people who do those terrible things. They dream up things like the punishment cell because THEY are the ones who really couldn't stand to be in there". This brings us back to the reason why adolescent school boys would brutalize one of their peers. Some kid has a need for acceptance.(Doesn't everybody?) He takes a look around and sees another kid who limps! , or has a speech impediment, or some other "abnormal" trait. He orchestrates brutality against the (abnormal) kid, based on HIS fear of non-acceptance,and the other kid's (other classmates) fear of being considered "abnormal". Stop and think about it--People with leprosy were put in leper colonies, not because of their evil deeds, but because other people were afraid of BECOMING lepers. (Here we go again with my flair for the dramatic). In Haitian Voodoo,it is not the ATTACK of a zombie that generates fear, but rather, the fear of BECOMING a zombie which fuels terror. So, how did I survive all of that? The answer must lie in philosophy, and in that, a willingness to understand why people do what they do. There is a little bad in the best of us, and a little good in the worst of us. I hope I haven't bored you or given you eye strain, because there's much more, but for now, we could all use some rest. ERNIE
Hi!
I've been browsing the web looking for soomthing that makes since
out of what I'm going through, and your web page came up. It
seems that there are alot of people with sleep disorders in the
world and they do not all have cut and dry clinical test results.
I am a lab tech. I was trained to look for definate cause and
name that disease. But it seems that now I am confused. I have
always been a sleeper. If someone asked me what my favorite thing
to do was I would say SLEEP!!! I could take naps during the
day and wake up refreshed for awhile, then be just as tired and
sleepy as before. When I was single I would sleep the entire
weekend away and think nothing of it. The year I was married I
was diagnosed with diabetis. Its been 11 years now. This year I
gained a ruptured disk that no one would operate on. So I take
meds to control the cronic pain. The disk cranked up my
neuropathy in my legs- more drugs. the Pain clinic doctor told me
that I looked like "A CAR WRECK WAITING TO HAPPEN". and
sent me to a sleep disorder clinic where they told me that I was
borderline sleep apnea and idiopathic hypersomnolence, which is
borderline narcolepsy. I am now taking Provigil and am sleeper
than ever and am concerned that they may put me on a stronger
drug. I am not a pill person. it took me a long time to get use
to the ones I'm takeing now. But the doctor at the sleep clinic
used the same words as the doctor at the pain clinic: "YOUR
A CAR WRECK WAITING TO HAPPEN" and that scares me. I have a
great nine year old boy whom I cart everywhere. I would die if
anything happened to him. I have always lived with the nodding
off at my desk, and sleeping on trips while my husband drove and
napping alot, but I could not live with myself if I was the cause
of someone elses death because I got sleepy. Have you heard of
anyone with this disorder and what kind of treatments they are
using, because the one I'm taking is not working!
this is long, and I don't expect to see it on the web, but you
can email me directly.
THANKS!!! JANA
Melody,
Thanks for the reply. yes, if you want to post my letter on the
web site, please do so. Today I didn"t take any of the
Provigil and I did not feel as tired. Whats that about. I was
taking 200mg in the am daily, then when it seemed like it
wasn"t helping the doctor uped it to one pill in the am and
another at noon. I tried that yesterday and boy was I a zombie.
My system never was one for reacting the norm to medications.
When my disk went out the had to put me on Delodid (thats not
spelled right) but even it would not help. I really don"t
want to go the amp way. I work in a drug testing lab. They
already tease me, saying they want to use me as positive
controls. We laugh. Today I did not take the provigil and I was
tired and sleepy, but I felt beter. I took a 3 hour nap, woke up
and did some chores, fixed supper, cleaned up, and am now forcing
myself to stay awake. I could have easly gone back to bed! So
what ever you can do for me will be greatly appreciated. I am
calling the sleep doctor in the am.
THANKS!!! Jana DPeay77237@aol.com
I am so glad to find this web site. I am 61 years old and have just been diagnosed with Narcolepsey-cataplexey. It kind of scares me and then again I'm glad to know that there really is something wrong with me. For so many years I have missed out on job opportunities, school was a real struggel for me. Everyone just thought I wasn't trying but I was. I have raised 5 children and am married for the 2nd time. I beleive in my heart that the narcolepsey had something to do with the break up of my first marriage. I was always so exhausted and no one could understand, including my doctors. Gus and I have only been married 3 years the 24th of this month. We recently changed doctors because of insurance. Gus insisted our new doctor look into what was causing my problem. I have had several lengthy "fall outs". and have trouble sleeping at night. I went to a nurologist who worked with narcolepsey patients during his internship. After just a short visity he hit it right on the head. Everything he asked was exactly what I have gone through for years. I have just started a treatment of Ritalin, so far the last couple of days have been great. I would like to hear from any of you that have some advice how to deal with this or if I can be of help to someone else please E-mail me. My name is Judy. GOFORTHEGUSTO@gateway.net
hello, i have
some questions to ask. I have tried explaining my situation to
people and so many dont understand. i think they
believe i am lying. I have a severe sleep problem. I have not
seen the doctor yet. I have been in therapy and currently am
looking for someone new to see and was hoping to discuss my sleep
problem with them.
it has been going on over 14 months now. i do not knowif it is
narcolepsy. I used to have chronic insomia...but now i find it so
point less to sleep. When i lay down to sleep...i immediately
start dreaming. It is like i watch myself dream. normally the
dreams are run ons and make no sense. sometimes i create whole
movies or tv shows. I am aware the whole time i am
dreaming. This goes on all night. I "wake" in the
morning, if you call it that and feel so exhausted. I am always
tired during the
day. Sometimes the ugr to sleep is extremely strong and i nod
out. sometimes i feel weak or like i cant keep my head up.
there are times i have slurred my words. But its the dreaming
part i dont get. how does someone watch theirself dream all
night. my brains feels totally active and aware. i honestly dont
think i am really sleeping. i dread going to bed. even if i feel
tired i know i wont get rested. its a terrible pattern.
I hope i am not bothering you and maybe you cant relate to this
but i need some help and info. It's almost 4 am eastern time
and here i am....knowing bed awaits me but not wanting to face
it. I dont know what to do. it has helped venting some of this
to you even though we havent met. does any of this make sense?
I know this might sound weird. i guess now my son came out i must
go to bed haha. anyway hope i havent freaked you out.
i can also hold logical conversations with people and look
asleep. hubby says i can open my eyes and look at him yet be
asleep at the same time. is that really possible i feel bizarre
that i can do that.i can be dreaming and still talk to him before
he
leaves for work in the morning.
anyway thanks for listening. i like your site and plan to looke
through it more. hope you are better please take care:)
KORINNA
korinna101@yahoo.com
Do you know of any more current information regarding the genetics of narcolepsy, the peptide hypocretin's function in the body and why it's not being properly metabolized in the brains of persons with narcolepsy, what if any other symptoms develope in our later years, and what common factors do we all share in common either in our genetics or experiences which might have contributed to the onset of this very peculiar disease? I appreciate this opportunity to talk to someone else candidly when it is so difficult to find pertinent information, so little is known at this time . By our involvement hopefully more research and time will be devoted to our cause. Thank you, Scott. Rmnsen@aol.com
Dear Melody,
I have read a lot of the stories you have posted on your
website. I can't tell you how good it feels to hear other
people talk about their experiences with narcolepsy.
It has been a little over a year since my diagnosis of
Narcolepsy. It was really quite strange because all my life
I was constantly falling asleep in inappropriate places at
inappropriate times. There has never been a gap in time
that I can't remember having sleep attacks. Like everyone
else, I have been accused of being lazy, bored and even
rude. One of my mother's first recollections of my daily
sleep attacks was when I was in preschool. She said I would
come home and literally fall through the door and be fast asleep
before I could get inside the house.
All the times that I remember falling asleep in school are
countless. One episode that remains in my memories forever
happened in fifth grade. My teacher used to give quizzes
after lessons and I would always fail them because I slept
throught the whole lesson. Many times my teacher would call
on me during the lesson to answer a question and I would always
ask her to repeat the question because I didn't hear it.
The class would just laugh at me, I was a complete joke as a
student. I only passed to the next grade because I was able
to sweet talk teachers, not sexually.
It took my fifth opinion from a doctor I had never met in my life
before getting an interview with a sleep doctor. (Insurance
was the reason it took so long to get the appointment.) I
was put through the MSLT and the woman who conducted the test
talked to me inbetween naps, mostly to keep me from falling
asleep, but she informed me that I was a total positive.
She was a great person. For the first time in my life
someone said, "How have you come this far? Do you realize
that you are an amazing person?"
Of course, that is a compliment that I didn't feel I could accept
because I knew I was worthless. To every employer, teacher
and friend I have ever had, I, Melissa Bryant, was
worthless. For once, someone said I was amazing for getting
as far as I had in life without crumbling. I have to admit,
I have crumbled. I couldn't stay awake to study for tests,
I couldn't stay awake to take notes in class for the tests.
Life used to feel so hopeless. I quit school (college) for
a short while but returned after only a semester of
absence. I took all the classes that I failed and took them
again and passed with B's and C's.
Finally, I convinced my fifth doctor that I was not depressed,
which was the diagnosis that was given to me by four other
doctors. The only reason I was able to convince this doctor
to try a new avenue for a diagnosis was because I told him about
the amount of times I had fallen asleep while driving. I
was always afraid of driving more than 15 minutes at a time
because I would fall asleep constantly. I can remember a
scary event, which I shared with my doctor, I was about 35
minutes from my apartment at the University I am still
attending. I woke up at 4 am and knew that I had to get
home to go to work. I had driven from the University to my
apartment a hundred times prior to this event, I knew the route
well. I woke up, used the bathroom in the apartment I was
at (which is near the University) and grabbed a jacket and
left. As I was driving, I began to fall asleep, I felt the
feeling but thought I could fight it. The next thing I
remember, I was at the bottom of the stairs at my apartment and
my roommate was looking at me. She said she heard me come
through the door and fall at the bottom of the steps. I
fell asleep. I had slept the whole car ride to my apartment
but I was the one driving!
Two years later, I can now say, My name is Melissa, I am 23 years
old and I have Narcolepsy. It sucks. Although, now I
am relieved of many of my symptoms due to Provigil. I still
experience hypnogogic hallucinations and sleep paralysis symptoms
quite frequently. My daytime sleep attacks are very few,
one a week, and far between.
Thanks for creating this internet site for people who don't have
an understanding shoulder to lean on. If this isn't too
long, you have my permission to let others read it. Thanks
again Melissa - mellbryant@aol.com