Our Experiences
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| Rhonda | Sammy | Jar1953 | Joe (2) | Michelle |
Hi, I'm so happy for you that provigil is working. It is not working for me. I keep thinking maybe it will, but I have been 400mg a day for a month, and then 600mg a day this past month and I still fight fallng asleep. Last evening I wanted to watch movie, and I kept falling asleep, so at 7:00 p.m. I took 600 mg again. (I had already taken that dose in the morning-I do get desperate some times). Anyhow, I did stay awake to watch the movie, but I also slept all night without a problem. I have restless leg syndrome, so a few hours after I went to bed, I took the Mirapex for that problem. The reason I did not take it when I first went to bed was because I thought I had already taken enough drugs for that day.!!! I go back to my neurologist this Friday. He told me when he increased the provigil the last appt., that if it did not work , we would start with something else. So it is back to the drawing board.
I'm so glad for this page. Keep us infomed. Rhonda
I just had to let you know I enjoyed reading your article. I was in 7th grade when I had my first "attack of the demon cataplexy." It was at recess and I started laughing and fell down on the asphalt play ground. My teachers came running, but by that time the whole thing was over and I was back to "normal." Like you, I have had may experiences, some very embarrassing at times and some were extremely funny. I won't go on and on, because all of us who suffer from this "thing" could write a book. I do want to say that I'm 54 and did not know that such an illness as narcolepsy and cataplexy existed until I was in my early forties. Thank God for that doctor. I was just glad to know there was a reason I fell asleep all the time, and fell down when I laughed. Rhonda
Hi Melody,
thanks for this site, but I do not get any of the links
described, there are just blanks in the text. I can receive links
from other pages; are you under construction right now, or is it
something in my settings? I am just learning about
narcolepsy, as my son was just diagnosed. I also wonder, do you
have any numbers on people with other diagnoses? My son has a
rare chromosomal disorder, ADHD, multiple learning disabilities,
low IQ , esophogeal spasms and epilepsy( grand mal, or
generalized tonic-clonic). He takes several other drugs, and I
wonder about how Provigil seems to work for others who are on
other medications at the same time.
Thanks, Marie
Marie and Alex/15 Georgia USA
Hi Melody,
thanks for your response. I went to the new address, but still,
under "My Favorite Links" and "Other Links";
no links, just your descriptions of them with large spaces in
between-no urls or hyperlinks. Maybe it is something in my setup,
but I got the hyperllink in your email to me...I'll ask my
brother-he is tech support trouble shooter for a big company, he
might know.
Thanks again for your support, this is a little
scary. I wonder if I will see his symptoms worsen as we have with
the seizures. Is narcolepsy progressive? I'm going to check the
message board -hope I have a response!
Marie and Alex/15 Georgia USA
Thanks for the
info Melody. Of course, it is the cataplexy I am worried
about!! LOL< that's life with Alex, though. He certainly has
less to struggle with than other special-needs kids I know, but
we just seem to go from one big deal to another. Well, we will
manage this, too...we are Christians, I and appreciate your
thoughts and prayers on his behalf. I would TRULY be lost without
the power of prayer-my own and that of others.
Now, this is weird, but as for the links...they are
there, just invisible!! My husband discovered it. He put the
cursor over one of the blank spaces between your link comments,
and sure enough, the arrow turned into the little hand and when
he clicked, it took us to the appropriate site! So, I do not know
what that means, but will let you know when I figure it out.
Marie and Alex/15 Georgia USA
Marierhays@aol.com
"I wish for you, my friend, this happiness
that I've found. You can depend on Him, it matters not where
you're bound." - from "Pass It On" by Kurt Kaiser
Hello
Melody,
I visited your site and think you have a great source of
information. I had many years of unexplainable things that
happened. Since Narcolespy is not so common, I was diagnosed to
have a deep seeded depression. For years I did not complain,
why?, because no one listened to what I said. Most doctors
thought I was just maybe looking for drugs. I knew one day I had
gone too far when driving down the road my daughter yells Mom,
and there a few feet away was an exit sign. I knew then that if
someone didn't listen I would end up a stat. Another year and a
half would pass before I switched MD, for insurance purposes. The
greatest thing was the doctor listened to me one time, not
hesitating, and found out that I had complained of these same
thing for so many years. He immediately sent me to a neurologist
and I was diagnosed. I still did not reveal some very horrific
things, still for fear. I thought I was safe with the neurologist
and started to tell him some very simple things, like being lost
going to the store or home and not know how I got there...etc. I
was told that that was not part of Narcolespy, in 6 months I
asked my MD to please switch neurologist. This time I picked one
from the famous NC\Baptist Hospital. Bowman Gray has always been
a leader in the medical community. Fortunately and unfortunately.
The doctor finally after 5-6 months, sits his chair in front of
mine looks me in the eye and says: I can help you, but I know
someone who can help you more than me. I was referred to my
present doctor, who is a god send. I will never give her up and
thank the lord daily for sending her to me. In the middle of the
initial diagnosis and finding her I became very depressed and I
believe I probably would have found a way to commit suicide if it
had not been for a book I had found at my library, Narcolespy the
funny disorder that isn't so funny, by Marguerite Jones Utley. If
you have not read it, please do. She is so very honest and I read
it like someone was writing my life, it was me. I knew and felt
confort in the fact that I was not crazy and that all my symptoms
were indeed Narcolespy. I think that the Neurological community
should recognize that even though they have the degree and title,
some should not try and treat a patient that they do not
understand, just because they can. It is no less malpractice, and
the patient could very well end up committing suicide because the
doctor has told them that some of the most frightening parts of
this disorder is not the disorder? The devastating disease is bad
enough alone to drive allot of people to that end, without a
doctor telling them that there is no answer other than that's not
part of the disease.
Thank you and God Bless!
Tammy Scott
Tammy_1964@Hotmail.com
Hello. I am a 36-tear-old mother with a three and a half-year-old daughter. Just last night I came across narcolepsy on the Internet. I'm new to the Internet. I finally got my daughter to sleep and I just want to cry. I have had instances similar to the stories I read on your site since I was about three years old. For years I have been unable to work outside of the home. I am intelligent and creative but I cannot guarantee from one moment to the next that I will be able to function. My poor daughter has had to deal with my problems since she was born. My husband used to travel a lot on business. He has just started traveling again. We are hundreds of miles away from family and when she was born I was virtually alone in the world. A few months before she was conceived I was hospitalized and diagnosed with bipolar. It took three years for me to recover from the 10 days of hospitalization. I've been through psychotherapy. I've tried the charismatic Christian healing route, which I do not recommend for anyone, especially with this illness. I was told that I was under attack by the devil and for a short time believed it. There is nothing like being alone in the world, believing you're under attack by evil forces, suffering from episodes and trying to care for a newborn infant. What a living nightmare.
Anyway, I have made such great recovery but keep running into brick walls. I have named my triggers Kryptonite. I am rendered helpless when I come in contact with emotional situations even when I am not involved. I don't know if it is cataplexy. Is cataplexy like being scared stiff. That's what this feels like. I remember one episode when a priest told me I had an evil spirit attached to me. I could barely speak or move. I had to keep talking to my self as I left his office saying,"It's okay honey. You can do it. You can make it to the car." And I did. I have often asked myself when faced with uncomfortable situation why I freeze. I don't know about the falling down thing. There have been a few times when I have fallen down at extreme emotional times. I always had excuses for it. I walk around scared that I will suddenly fall or crash the car or drop my daughter. I walk around anxious and fighting to stay awake most of the time, except when it's time to go to bed. Then I feel scared. Since I was a child I have felt the presence in the room and thought some man was coming to kill me. I hallucinated when I was young. The hallucinations have just begun again the last four months. I started Paxil for irritability and social anxiety six months ago and wondered if the Paxil was causing the return of the hallucinations. I also see a circle of static in the center of my vision from time to time. This is all really creepy to me. I am going to call my doctor and make an appointment to talk about all of this. I am afraid of being treated like I have some mental illness again. I have been deemed completely sane by medical professionals since the one hospitalization. I can't stand the thought of being treated that way again.
Rachelle
Melody, Thank you for responding. I have already located a doctor now that I have an idea of what I am dealing with. He is a neurologist who works at a board-certified sleep disorder unit at Florida Hospital here in Orlando. I have an appointment for a consultation tomorrow morning. My husband and a good friend are coming along for support. The saddest part of my story has nothing to do with me. My father and two sisters have been suffering worse than I have for a long time. My father has been disabled and under the care of psychiatrists who have labeled him mentally ill for over twenty years. He and my sisters have been in and out of mental hospitals and abused terribly. They all live in Michigan. Glen and I moved to Orlando over five years ago to get away from the constant struggle within my family and try to get me better. With the help of an awesome psychologist and learning that God is a good God and not a punishing God I have come a long way. I no longer feel I am going insane. I used to suffer severe panic attacks and now I recognize it as my body acting up again instead of hearing the voices from my past saying,"You are under attack from Satan! Tell him to flee in the name of Jesus and all your problems will go away." Lovely, huh? I have had a very challenging last twenty-four hours. I began getting "dizzy" feelings after having fun with a friend. All we were doing was talking, laughing, sitting and making art. I didn't tell her I was feeling weak when I left her house. I came home and received the papers from the sleep disorder place and became excited about the fact that someone would listen to me. My daughter was dancing around the living room being silly and I tried to do the same. We both started laughing and all has been down hill from there. I became very weak, drowsy and sick feeling for the rest of the evening. I woke five times during the night and had nightmares. I took my daughter to daycare and had to cancel my plans for the day. I couldn't fight off the sleep and when I fell asleep again I had more nightmares. Finally I forced myself to go to a neighbor's house after lunch, still feeling drowsy. We started laughing and I became sick again, came home and went back to be until it was time to get my daughter. Right now I am dealing with E-mail to stop myself from going to sleep yet again. I do not want to go to sleep when I am alone with Maddie. I used to but she is doing very dangerous things now, such as wanting to use scissors, and I need to pay attention. This is supposed to be my "date night" with my husband. We already have a sitter lined up. I'm not sure what to do. What a day! Thank you for taking time to read this.
Melody: Everything went very well at the consultation this morning. The doctor believes there is a good possibility I have Narcolepsy and wonders why it hasn't been explored sooner. I am scheduled for a nighttime and daytime test the middle of August. I'm not sure what to pray for. A positive result means I'm going to be dealing with this the rest of my life. A negative means I'm still searching for an answer. At least Narcolepsy means your not going crazy, and it's not life threatening. I hope you don't mind my little updates. You're my only contact right now to someone who can understand. My husband and daughter are out at the grocery store buying stuff for him to cook for dinner. I feel too drowsy to even care about dinner right now and sometimes, more often all the time, I just don't feel like fighting the urge to sleep. I feel like a lazy slob. I feel like I have been in battle so long and I just want a vacation from drowsyland. I used to be known for my energy and enthusiasm. Enough about me. I hope you are doing well. Take care. Rachelle
Dear Melody, Well I am facing a very long holiday weekend and then on Monday I finally, I mean FINALLY get to go see the neuro guys. I am hoping that this is all going to be sooooo simple as to get the final stamp of narcolepsy / cataplexy this time. My general Med doc says yes that is what it is however the Neuro guys said that the 1st MSLT numbers (?) which must be how fast I fell asleep were only border line. They wanted to see if I could do this test again and fall asleep even faster. How is it they cannot do these things at home??? MY HOME??? Well, as you can tell I am a little agitated. I will try to post again after my appointment. With all the other problems I have... who knows. I know tho' that if I have the neuro say this is the narcolepsy / cataplexy it is an answer to strange events, then no more tests, no more worry, and no further damage from the vascular disease in my brain just yet. I am only 39... I am wanting to just get on with the rest of my life. If I have an answer I can get on with doing what I need to do. LIVE.
Your a peach for having a place to spin my words and crazies sometimes. :) Peace, you may post this..Sammy
HI I am in the process of being diagnosed. I am - I would say "in the middle of my story". Partially because I am hoping to live at least another 39 years. I am also very sure that what I have is cataplexy, I don't know if you can have that and not have the EDS / Narcolepsy part, however all of my research is showing the cataplexy.
My "story" for the cataplexy is rather short, and I did not even know that other people did not experience falling over 'episodes' nor the sleep paralysis. I always thought from the time I was about 9 that everyone did this. I have never seen anyone do this however I just assumed they did it. I was not afraid of the paralysis while waking up or going to sleep as I assumed that I was 'just laying wrong pinching a nerve'. I took much for granted with my physical health, assumed much, ignored even more until April 1999.
Why April of 1999?
Because I went to the doctor after an episode of blotchy blindness at work. I had thought my computer was screwing up and asked a co worker to come and look at the screen. I thought I was seeing blank spots, it was as if someone had cut holes in a paper and I was looking through the page. My co worker had assured me that this was not the case, and then another co worker (who I disliked) said something that scared the hell out of me. " You're probably having a stroke". I think my heart actually froze at that moment. I called my Dr. and she sent me for a carotid doppler test. I had indeed had a TIA, my carotid artery was blocked almost 80%. That news I found out on my 38th birthday. From there it was a roller coaster ride from hell to this date. From the beginning of April to husbands birthday I had gone through innumerable test, 3 angioplastys (blockages in my heart also). On my husbands birthday May 14th 1999 I had a heart attack. Yes I have a very strong family history of heart disease. I am the 2nd to the youngest of 9 of us. Biological parents and one brother deceased each before the age of 50. I was destined..... All of this may seem off track, but I do believe there is a correlation of the cardiac problems and the narcolepsy, cataplexy. During this past year part of my biggest complaint is the exhaustion that I feel and the inability to recoup my mental status. I have become frustrated and down right angry at the multitudes of Doctors who have said I am depressed / scared. I agree I am depressed, but NOT abnormally so. It took more than 6 months for them to take my chest pain, spontaneous vomiting serious enough to find out my gall bladder was bad through all of this. Because of the struggle to CONVINCE the doctors that I am not a hypochondriac the suffering I experience is immeasurable.
I no longer take my health for granted, assume anything and NEVER IGNORE anything. I almost lost my life. I am responsible for ME. A lesson that I have learned the hard way.
About 6 months ago the "cataplexy episodes" became very pronounced. My family has always known that MOM has a difficult time staying in an upright position. At this time though I was falling over and actually hitting the ground more than not. My daughters began to tease me about "making snow angels". Spring came and I began to "make mud angels", I do love to garden. I have such a multitude of health problems happening all at once that my General Med Dr. and I decided we would tackle this one thing at a time. The falling episodes were not life threatening and were not frightening, we knew through tests they were not cardiac related.
The first neurologist I saw chalked me up as severely depressed and having "pseudo dementia", whatever that is. I had originally gone to see her due to severe memory problems, turned out it was the Prozac I was prescribed to help with my "depression" I had a brain MRI, the doc said, You don't have a tumor , take this antidepressant and it will save your life. I threw the antidepressants away and tried to fit this new problem into my life. I was tired and had no energy to fight. Not long ago the falling symptoms became more frequent and more dramatic, or more traumatic.
The second neurologist I saw immediately suspected cataplexy. Since I had already had a sleep study done as a "elimination test" the Dr. agreed to look at it and sent me to a specialist with the sleep disorders. Before I could see this next Dr. I had an episode that freaked me, my family and half my neighborhood out. I was sitting on my couch reading the paper when an overwhelming desire to sleep hit me. It felt as if my brain sloshed in my skull and hit the back of my head, forcing me backwards. My family was unaware of what was happening at that time and I was "frozen" or paralyzed for several minutes. Then although I was very alert to what was happening around me I couldn't open my eyes, neither could I control what was happening. I began laughing and crying uncontrollably. Maniacal laughter, hysterical crying all in one breath. This my family became alerted but thought that I was simply messing with them. Only when I was asked questions and after more than 10 minutes did they realize I was in trouble. After a period of time I was able to get a word out in between the laughing and crying. Help, 911, help, doctor. My husband called the doctor and he responded with "It is symptoms of the cataplexy, she will be okay no need for the emergency room". This first episode with the laughing / crying lasted more than 30 minutes. To date I have experienced this type of episode about 6 times. Each time is slightly different but basically the same. The longest episode lasted approximately an hour the shortest ones are seconds long. I had an MSLT since then which captured a particularly bad day, 4 or 5 of these long episodes. The neurologist wants to repeat the MSLT, General Med says it is cataplexy. Apparently all of the numbers for falling asleep don't quite fit the narcolepsy scales.
I am scouring for information to give the doctors, deep down I know this is what I have. I have identified so many symptoms that I thought everyone did. I did read my medical chart from the first neurologist found that the brain scan showed severe vascular disease in my brain. Have I developed this from the TIA? probably it has been exacerbated, but I believe it has always been here, just undiagnosed. The vascular disease is very extensive all through my body, my changes in health are dramatic. I want to look forward to alert years left. Having an answer or a name for my episodes would be comforting. The unanswered or ignored symptoms are the worst.
That so far is my story.....
Dear Melody,
I think if you dont mind I will write a little about what my first cataplexy attack in public was like for me. Maybe because I think you will understand.....
My hubby and daughter took me to a restaraunt to eat. This place is a small place and has large front windows. It is in an old store from the early 1900's. These windows are floor to ceiling ones. I felt a little funny like I needed to eat right away, as if I was getting a case of the shakes. Weak all over, I instantly got crabby asking to just take me some where, where I could get food fast. Hubby helped me across the street and into the restaraunt, I sat in the first available chair, which happened to be right in the front window. Not caring where, or being alert enough to argue I sat on a chair, not a booth. Hubby and daughter went to order the food. I felt myself drooping fast and saw the room swim a little, down my head went to my chest. I struggled to pull it back up and tried to call to them but was unable, I knew it was gonna happen..... the laughter, crying crap. Oy I did not want this to happen there, people were every where and it made it worse. I somehow managed to get my arms propped onto the table before my face dropped to the table, not hard but I still was completely paralysed. I had a ball cap on my head and had a thought that I was glad I had worn the ugly thing so no one could see my face. Then a thought raced through my head, People around me must think I am drunk. How embarrassing, then another thought.... I am on display in the front window with people passing by thinking I am drunk. Oh my ... I tried to pull my head up, this only accentuated the drunk appearance, as by now several minutes had passed and all I could do was bob my head up a little. In my mind I was screaming for my family to look at me. I was drooling on the table, how gross is that? Would anyone respond?
Several more minutes passed with these racing thoughts and no strength the laughter began and the crying, the crying became stronger. My husband and daughter returned to the table... Sam are you ok? Mom! Mom are you doing it again? My hubby sat next to me, and I raised my head a little the laughter trickled out, my daughter said Yep she's doing it again. I managed to squeek out a help hold me. Both my daughter and husband sat close on both sides of me holding me up. The crying and laughing took over, I tried to keep quiet and not think of anything funny as this only makes it worse it seems like. My husband and daughter started giggling and that sent me off even farther. I begged them to stop when I could speak.
The waitress brought the food and I was so incapacitated I could not do anything. This upset me that someone else was so close to me I cried even more uncontrolled, and laughed a little more. Finally after about 20 minutes or so I was able to raise my head. Most of the patrons who had been in the restaraunt when we entered were now gone. Only 2 or 3 tables of folks remained. I asked my hubby how dumb I had looked, my daughter responded with " Dont worry about it mom, you just looked like we had told a good joke". AHHH the strength of my girls. Hubby calmed my fears a little more and we ate, I still felt disoriented, this feeling hung on for quite some time. In fact I dont think I felt really like myself until the next day.
Well, if you would like to post this you may. I did have another episode today in public but not as dramatic or as debilitating. I hope to hear from my doctors soon. Thanks again, Sammy
Hi my name is
Bernadette and I am returning to college at age 41. I am also
terrified I won't live to graduate. My four children and my dad
are also scared for me. I fall asleep standing, sitting, driving
and smoking. I have bruises and burns all over me and burns and
spills all over my apartment. They are coming to inspect my
apartment to see if I can renew my lease this week, they already
told me I couldn't if they were any stains or burns anywhere in
the apartment. I have to move again. The doctors are baffled. My
current doctor says this isn't narcolepsy because I don't have
all the symptoms. I have more trouble in the early morning and at
night which I guess isn't typical. The nurses at the doctors
office don't want me rushing them to get me into the sleep
clinic, they are just too busy. Meantime here last night I almost
broke my neck, when I fell asleep at my desk my face hit sideways
on the way down and twisted my neck very badly. I cry all the
time, sometimes I wish I would just get it over with and have the
big fall, just never get up. I am exhausted all the time. I wreck
everything I own by falling on it, spilling stuff on it and
dropping it. I would not wish this on my worst enemy. My arms are
always tired and I can hardly lift them over my head, my hands
are almost always numb and I feel very ashamed that I can not
seem to do any better than this. I don't like anyone to know, I
feel somehow like I am being punished but I don't know what I
could have done so bad. I just know I can not go on like this
much longer. Does anyone have any advice, please?
Falling Asleep literally,
Bernadette
bmk_40@yahoo.com
Hi! I we reading the different stories. I was just diagnosed aboyt 2 months ago anf sleep apnea. I was overdosed in September on Ritalin by my medical doctor, she didn't do any testing and started me on 60mg. I had 3 seziures and heart problems, I am doing great now and was properly tested. I am currently on 30mg of rilalin a day and feeling like a normal 20 year old. My mom also was diagnosed with narcolepsy in November. Ritalin can be a miracle worker bit it also has some dangerous side affects-I want to share this so people are aware of the dangers. Through the grace of God and my families prayers, I am healthy, properly treated as well as not suffering and life long problems and I thank God everyday for the angels he had around me! People with this disorder need to know there is help through medication, they just need to be careful and see the correct doctor. I tried taking Providial, but the side affects were bad and it really did'n't help. Ritalin helps so much now and I hope other people know to ask the doctor about it. My e-mail is: sneedham@holox.com Sarah Needham
Hello,
My name is Diana, I am dating a guy with narcolepsy, our first
date a hockey game he fell asleep at the end I didnt think much
abt it since he gets up at 4am to go to work, I just figured he
was tired, next night he came over to watch a movie, put in
video, within minutes he was out like a light, again chocked it
up to getting up early for work, he was in my kitchen getting
ready to empty my trash he bent over to tie the bag and bam he
was snoring, it really scared me I didnt say anything, so he went
to empty the trash, I watched him out the window, and he was
standing at his truck, and the next thing he was slumped over so
I went out there he was asleep. I have never been around anyone
with this disorder, so I asked him if he had a sleeping disorder
he said yes and has had it for 20 yrs, I asked questions, he
answered them and said most people have a problem with that, I
dont have a problem with it , I am really concerned for his
safety, while driving. He said he tried medication for it but it
made him jumpy and felt like he had a hang over. What are you
views or tips on dealing with this, anything would be helpful.
thank you
Diana - DinoFritz@aol.com
I want to
participate in your board. Here is a short version of a long
history of problems that I am trying to sort thru now. I am a
nurse that has been having alot of problems since my teens with
fainting and acting out dreams and on and on.... Please don't use
my real name for fear that work will recognize me.....any
directions that you might have will be helpful.
1. Sleep problems have been long diagnosed in the past as not
getting total muscle relaxation at HS causing me pain during the
day.
2. Dg with Polyarthritis. Noted that I could not lie for longer
than 5-6 hours a night.
3. Failed Medications: Lodiene, Feldene, Asulfadine, Plaquanil:
constant headache 6-7 days into therapy. I have also come to
believe that I haven't been sleeping well during these trials
& that the headache may be related to sleep depravation
rather than the meds. Methotrexate injections were wonderful, but
I had episodes "grand mal seizures" 6 weeks into
therapy & the MD discontinued it due to the thought that it
brought the seizure on but, I began a 6 year cycle of
anticonvulsants with many side effects turning me into a fat,
balding female Tasmanian devil from hell. I have been on
Prednisone for therapy several times. A CCF rheumatologist
suggested low dose Prednisone daily several years ago, but I
refused to go on it permanently.
4. The pain is cyclical so I am not sure if the meds (elavil,
celebrex and darvocet right now) helped or if the weather
calmed..or I got some decent sleep. I know that if I don't take
it, I start having more sleep problems.
5. Dg: Partial complex seizures, 2 grand mals in 1994: maybe from
reaction to Methrotrexate (I wonder if not cataplexy now). Was in
the seizure clinic 8 days & did not seizure.Went from there
to Sleep studies. Dg with hypersomnia (average minutes of falling
asleep was 7mins. 4 min if you throw out the first 20 minute test
of 17 minutes to fall asleep which was prolonged due to feet pain
and getting comfortable. I did not go into REM sleep tho.)
Polymalygia: fibromalygia, early RA & or undetermined
autoimmune disorder. Also a monoclonal gammapathy: non-specific.
6. My primary problem with sleep is acting out dreams. Vivid
dreams to the point I believe it happened (if not too wacky),
passing out & breaking bones after getting up at night/early
morning. Can no longer sit down to watch TV or read a book
because I immediately fall asleep. I will go and go until I get
so tired that I go to bed at 4-5pm & sleep until 9-10am the
next am at times. Can't wait for stop signs or lights while
driving so I can close my eyes for a moment/have pulled off the
road once or twice to rest them. I have ended up in wrong places
hours later not knowing how I got there. I can not concentrate
& get distracted easily. Have gained weight. Ramble answering
questions, mainly because can't remember what the question was.
Started writing down everything to remember… Occasionally,
feeling of knowing what is going to happen next or that something
is familiar. It comes & goes quick that I forget the entire
thought process. Music irritates me in general. I get an instant
headache & feel like nails on a blackboard with certain
music: ie: Kenny G type of music. I get overwhelmed at work when
staff attempt to cover up the hectic pace & noise of the ED
with most music. Kenny G will set me off no matter when it is
played…. Duration: 40 years. Can't lie in bed at times
unless my feet hang out over the side, because of discomfort/pain
when I touch the bed or sheets. I wake up at night with pain in
my left heel/feet, hips, shoulders, & back. I get up &
stretch which helps. I realized that if it weren't for the pain,
I would sleep forever in the early morning, getting up and down
without "really" waking up. I never want to get out of
bed. The pain forces me. I also have times when I wake up with
extreme n/v/d…. I pass out on the way back to bed & wake
up on the floor refreshed without N/V/D any longer. I continue
dreams from one waking point, to going to the RR, to going back
to bed. It plays out in my head. I have had a same type of dream
since childhood of a bull chasing me. The mattress is often
shaking or buzzing. I have attempted to harm my husband with
hitting him with marble based lamps, or tossing him out of bed
after not recognizing his breathing or him or thinking he was
having a seizure. I have out of body experiences, feeling of
floating, & the feeling that I will die if I let my body come
all the way out. The one & only time I did fall all the way
out. I had a near death experience (6/94) which landed me in CCU
& on seizure meds for grand mal/partial complex seizures. I
am extremely sleepy during the day if I allow myself to sit idol.
I keep moving. This has increasingly gotten worse since 1994.
11. In the past year my sleepiness has been worse. I fall asleep,
or sleepiness seriously interferes with: Reading, Watching TV, At
gatherings, At work, and driving.
12. I am without apnea.
13. I am a restless sleeper.
14. I wake up with morning headaches: frequently. I often am
aware I have a headache in my sleep. At times I am confused in
the morning. I wake with morning stiffness and pain.
15. I will occasionally dream I am on the toilet but will catch
myself from going as it occurs. I have peed myself x1.
16. Once the gals at work decided to put one of those "ED of
on a bed under a sheet & tell me to take the body to the
morgue jokes" on me. In route the corpse sat up with a
birthday hat on & started singing me happy birthday. I
screamed, fell backwards, peed myself with respiratory
interference
18. I have been told that I sleep walk or perform other automatic
activities in my sleep. I wake doing them.
19. Night sweats occasionally.
20. I am rarely depressed, but will get so the hours before an
episode of out of body or cataplexy/seizure (I don't know what
they are) like episode
21. My sleepiness has been associate with weight gain
22. I would never go to sleep if I didn't sit or lie down. I am
good at staying active & staying on guard. Once I lie down to
sleep I am out in less than 15 seconds per husband.
23. The average number of times per night I wake up: 1-2 times
remembered.
24. My body will say to go to bed at about 3am. Every night. I am
currently forcing myself to lie down between 11-12:00am. I wake
up in about 5-6 hours no matter what time I go.
25. I never nap during the day
26. Covers are extremely messy in the morning. I am often upside
down in bed when I wake.
27. I wake myself or my hubby by kicking legs at night? I am a
very restless sleeper who will occasionally have horrible
nightmares and I grind my teeth to the point of wearing them
down.
28. I occasionally walk in your sleep now. Always as a child.
29. I frequently talk in my sleep or get confused in my sleep.
30. The other night I was watching Tv and got so sleepy that I
"fell" into the plot and made inappropriate comments of
confusion in trying to watch the movie with the group... I knew I
was confused and couldn't figure out what I was even talking a
about let alone our poor guests. I knew by the looks on their
face that I said something inappropriate to the situation.
31.These episodes have gotten me into a whirlwind of numerous
medications, dg, side effects, etc. The CCF has made me doubt my
sanity talking about non epileptic seizures and the Sleep lab has
me believing that I am extremely sleepy, with a dg of
hypersomnia, with no narcolepsy only because I didn't go into REM
sleep during the studies but I fell asleep between 4-7 minutes on
an average. The internet leads me to believe I have sleep
paralysis and cataplexy explaining all these bizarre out of body
and seizure like things that happen to me....with autonomic
behavior acting out dreams....not recognizing my husband and on
and on. I have become much better just cleaning up my sleep
habits, but I still have "funny" situations which are
ok, as long as it doesn't happen somewhere dangerous like driving
or at work.
32. I feel that my work is now being affected as my memory is
poor, I get confused occasionally with what I am doing &
routine tasks look like Greek. I get distracted easily. I can't
find the right words at times and can talk myself all around it
but can't bring up the word I want. I say the wrong thing like I
meant to ask for oral thermometer the other day and I asked for
rectal. I rambled in a recent interview for a new job at work
because I kept forgetting what the original question was &
talked myself from one thought to another. Some people have
noticed these & it has shown up on my evaluation as
scattered, poor organization skills etc for the first time in my
life. If I get too tired, I have confusion and even autonomic
behavior I think. I have gotten myself into better hours from 2nd
to first shift which has eliminate problems there with what seems
like micro sleeps to me with resulting confusion. The neurologist
has also started me on pravagil (only half a dose because I get
too nervous and hyper on it) and a sleep aide antidepressant at
night...currently trying elavil at the suggestion of my
rheumatologist although the neurologist isn't crazy about it but
I failed with neurontin which was his suggestion.
33.I have numerous projects started and have difficulty getting
them done.
JAR1953@aol.com
I am 67 years of age. I retired 7 years ago. I have had a problem with excessive daytime sleeping for many years. With coffee and an occasional nap somehow I was able to get through it to retirement. My daytime sleepiness increased by leaps about 3 years ago. The doctors all said I was suffering from Depression. I have been taking Antidepressants for years. I think I have tried them all but with no success. I cannot keep my eyes open. I either wear dark glasses or keep my eyes closed most all the time. I sleep standing up and people cannot understand. I have gotten to the point to where I sleep about 20 out of 24 hours. Sometimes my wife can't understand why I am so tired and sleepy but I am singing. I am not depressed all the time. This is enough to depress anyone. About 3 years ago I had a sleep test performed. The results showed I have "Severe Sleep Apnea," according to the doctor. I have a C-PAP which I use every night. It is set on 14, which the Neurologist said was high. It isn't working. I can't stay awake and I don't want to exist this way. I have been told I could not have Narcolepsy because that is a "young persons" disease. I am at the end of my rope. Does this sound familiar? Have you heard symptoms like this before? Please let me hear from you. My Psychiatrist prescribed Ritalin for me about a year ago. It did help some for a while. I am so surprised I could stay awake to write this, I am so tired and sleepy. If you can offer any encouragement it will be so greatly appreciated. Thank you for reading this. Ranos@aol.com
My name is Kimberly. I am 35 years of age and have Narcolepsy.I found out last summer. I am on Adderall . I stopped taking the medicine as it made me very dizzy and my heart pounded rapidly. It is not a great thing to live with. Even more so when you can't get the proper help. I could never tell the doctors everything they w would think that I was nuts. As before I was diagnosed I thought I was myself. The worst part for me is the hallucinations. They are more real for me everyday. I stay awake at night and sleep in the day. As it seems that the dreams come so fast these days. My eyes are still open and I am already having some terrible evil thing touch me and frighten me until I wake myself up find out it's not real. At first they did not speak to me and now I know that it gets worse with age. Sorry about caring on. But I feel that I could write so much more. Wish that there were more people out that understood how and why this happens. Thanks for listening and hope to hear back from you and others... Kimberly kimberann35@aol.com
Hi, my name is Robert. I am a deaf student. I have narcolepsy four years now. Do you know any one who is deaf and has narcolepsy? I am really having a hard time fin College. I have been taking Adderall for almost four years, but it is not good for me. I am trying Provigil but I don't feel anything and I am still sleeping during class. I am at Gardner-Webb University in North Carolina. There is only one other woman at Gardner-Webb just and me that has narcolepsy. I am trying my best to study hard and keep awake during college. It is not an easy part in my life. I know I feel bad because I am deaf and my life is getting worse. My eyes get very tired from trying to watch the Interpreter all the time.
Robert F. Rbt732@aol.com
Hi, my name is
Joe I have recentley been diagnosed with the sleep studies that
said the results were suggestive of narcolepsy, One question that
came to mind after briefly reading your homepage was "Do we
need to be concerned that
narcolepsy will be seen as the same type of new disorder that
A.D.D. was/is were it went from obscurity to front page news, I
think what I'm really asking is every time we turn around, there
seems to be the discovery of a new disorder, and they all seem to
blend together after a while, can you see that happening to us?
especially when I can already relate to you when you say that it
is very misunderstood. I for one thought that if you did'nt fall
sound asleep in the middle of a conversation then wake up and
continue right were you left off, then you did'nt have it, also
not until recently did I realize there may be a connection
between narcolepsy and depression. I recently lost my job driving
a truck due to this, I had an accident with my work truck, so
they took me off the road until the sleep studies were done, from
Oct. 2000 to Jan. 2001 I worked in the shop and during that time
I had 2 tests done and they tried 2 types of medications and they
laid me off just B4 the 3rd study was done, thier reason was I
could no longer do the job I was hired for and they had to make
cuts anyway so I was the 1st to go, I had my tonsils and uvula
(the punching bag in the back of your mouth) removed for sleep
apnea back in '97. my worst symptoms are the rapid
"Jimmy"leg movements at night and excessive
daytimesleepiness.
(I hope this e-mail is not so long winded that you lose interest,
I will tell you now I appreciate your patience) I have had some
hallucination exp., I had alot of times were I would have to
travel on the hiway to return to the shop (approx. 30 min. trips)
were I have absolutley no recolection of the trip. I do remember
one hallucination to share that you might find interesting (one
that when most people hear it they label you a wierdo) I was in
my truck on the hiway coming back to the shop and as usual I was
fighting the sleepy feeling that I always get while driving, I
knew I was drifting in and out of sleep,I was trying to
concentrate on the road particularly the dotted lines , I look up
and I see that the pavement has become transparent and an
elephant is floating in front of me (roughly 2 car lengths ahead)
the top 1/2 of his body was above the ground and the bottom 1/2
was below it and he was blowing bubbles out of his trunk and they
would hover briefly (at ground level) then pop and right were thy
popped the white dotted line would appear on the road, ironically
my eyes were open and I know I was asleep but I remember
following the lines and it seemed to help although I was quite
startled when I realized that I was indeed asleep. I could go on
forever but I feel as though I already have. I appreciate the
oppertunity to share my exp. with you, I wish you all the best in
your efforts not only with this website but in life as well.
thank you, JOE Eggiesinthejuice@aol.com
My name is
Joseph Pryor and I have a sleeping disorder. It all started when
I was 11 years old. One night I decided to stay up and look at tv
at my neighbors house. My parents were not home at the time. I
clicked to a channel, and that channel was talking about ghost
and spirits. All of a sudden I got a little scared.
The following week I started to get paranoid to the point were I
could barely move.
Anxiety and constently thinking about suff would make me not
sleep as fast as I should. It got to the point were I couldn't
sleep at all. I found it difficult to clear my mind while trying
to go to sleep. As a result I got headaches from not getting any
sleep. terrible headaches is more like it. When I reached my
later teens the headaches went away but not the worry. The older
I got the less worry I did yet my sleep didn't improve after the
worrying stopped. I can't sleep at all and I am 20 yrs. old. It
has been times when I was almost about to sleep and I would wake
up. If you have any suggestions please help me. JAMESJFM8@aol.com
My daughter is
having problems and I am thinking that it could be narcolepsy.
She has been having a problem with her hands turning blue,
tingling all over and being exrtremely tired. I thought of
narcolepsy because of the tiredness, however, the other symptoms
I wasn't sure. I have brought her to doctors, specialists, I am
tired of hearing that they don't know. I am going to ask her
doctor about the narcolepsy but I thought I would ask you.
Today she played softball for about 2 hours and we left there and
she went to cheerleading pactice. I dropped her off and I got a
call about 20 minutes later saying that she wasn't feeling well
she couldn't even hold her head up and she was very incoherent. I
left to go to her and when I got there they had call the
Ambulance. She ended up going to the hospital. Her pulse reat was
up and her hands were ice cold she couldn't even lift her head
up., walk, or even open her eyes or talk. The doctors at the
hospital took blood said that everything was normal and sent her
home.
can you give me anything to go on.?
Thanks Terri Skinner Mother Of Erica
Tagskin@aol.com
My name is Craig K. Wood and I have narcolepsey. Well I have all the other problems associated with narcolepsey except the uncontrollable urge to fall asleep. I have been hesitant to talk about it, because people will look at you as if you're nuts! I have sleep paralysis, hallucinations and leg tremors. Also, like everyone else, I'm in no big hurry to go to sleep most of the time. I've been given several different kinds of meds. Dilantin, Cylert and Tofranil. Apparently at one time neuro docs thought I has sub-clinical temporal lobe seizures thats the reason for Dilantin. Well got to go for now. Stay in touch please. Take care, Craig Iwuzacop567@aol.com
First and foremost I would like to say thank you not only to Melody for the website but also to all of the people willing to put their personal stories where other people can learn and grow. Secondly I would like to share a little bit of our story. My daughter started having some strange symptoms in April of 2000 .We took her to a family M.D. and he worked really hard to find out what was going on (we did not have the problem of the doctor thinking it was laziness ect..that alot of you had, ours was great.).We had blood tests run on all of the known family problems. (diabetes,thyroid,asthma,ect.) Alot of the symptoms were getting worse by this time and a few more were added she was starting to have times when she couldn't seem to be able to hold onto things .She has a bedroom upstairs and I watched her nearly fall down the stairs,this is when I started going crazy I think .At this time our doctor started thinking maybe she was having some sort of mild seizure activity so he set us up with a neurologist and from there we went into the sleep study and finally we had a diagnosis .(big sigh) We then were able to diagnose my husband who had suffered with alot of the same symptoms on a smaller scale. They have been put on provigil and they are doing really well .My daughter plays sports is a straight A student is involved in church activities and speech and drama .The only way she is able to be this active is she has a great support system .We have made a big point in making sure everyone around us is informed and educated about N and all the side effects of the N. It helps that we live in a small town and everyone sees the difference in how she acts and feels and I have had them come to me wanting to be informed. We have had to change our lifestyle to fit this ,but it is well worth it. This is not a easy thing to live with and we know there will probably be changes in the future ,but we put our trust in the lord and go on, on a daily basis.please print this and my e-mail address so that maybe my families story might help someone,as we have been helped with others stories. Thanks again, Michelle
MELODY, I JUST WANTED TO E-MAIL TO LET YOU KNOW THERE IS ALWAYS GOING TO BE PEOPLE OUT THERE THAT REFUSE TO EDUCATE THEMSELVES AND ALSO REFUSE TO ACCEPT THAT THEIR THINKING MAY BE WRONG.MY DAUGHTER HAS LOST WHAT WAS SUPPOSED TO BE HER BEST FRIEND AND I THINK ALOT OF THE REASON IS BECAUSE SHE COULD NOT OR WOULD NOT ACCEPT MY DAUGHTERS LIMITATIONS.ALTHOUGH THIS SUPPOSED FRIEND WAS ONE OF THE ONES THAT WAS REALLY WORRIED ABOUT HER BEFORE HER DIAGNOSIS,ONCE SHE WAS DIAG. WITH N. IT SEEMED TO ME THAT SHE EXPECTED EVERYTHING TO GO BACK TO NORMAL AND WHEN IT DIDN'T SHE COULDN'T UNDERSTAND.THAT IS WHY THIS PERSON THAT WAS SO UGLY TO YOU NEEDS OUR PRAYERS,SO THAT THEY CAN LEARN TO ACCEPT THAT EVERY N. IS DIFFERENT.I HAVE TWO IN MY HOME AND THEY ARE TOTALLY DIFFERENT IN ALOT OF AREAS.EVERY SINCE WE HAVE STARTED TO DEAL WITH THIS I HAVE BEEN A BIG SUPPORTER OF EDUCATION FOR US AS FAMILY AND EVERYONE WHO IS WILLING AROUND US.I GUESS WHAT I AM TRYING TO SAY IS DON'T LET IT GET YOU DOWN. I WILL BE PRAYING FOR YOU AS WELL AS THIS OTHER PERSON. THANKS,MICHELLE wcoats@ptsi.net
I have been wondering if a person gets disability ins for narcolepsy would they still be able to drive? My son has narcolepsy and doesn't seem to be able to do anything and I was considering having him apply for disability but he would hate to give up driving. kathyjh412@aol.com
Melody,
I am Kristi. I am only 18 years old, and I found your website
very informative. I am writing a poem on Narcolepsy to inform my
class about it. I am also entering this poem into a contest, in
hopes that it will inform others. To be honest, I had never
really heard the truth about Narcolepsy until just a few minutes
ago. I was VERY uninformed about it. Thank you for the
information, and I hope to God that you know that there are
people who care.
Sincerely,
Kristi S.
Charleston, SC
Senior
West Ashley High School
<')))>< LittlePhish
TheOcean: Home of the LittlePhish - The LittlePhish@aol.com
HELLO MY NAME IS
REESA
MY DAUGHTER IS 19 YEARS OLD AND IS ALWAYS TIRED ,AND ALWAYS
NEEDING NAPS .HER DAD HAD NARCOLEPSY, AND WE WOULD LIKE TO KNOW
IS IT HEREDITARY? SHE HAS BEEN TO DOCTORS THEY JUST TELL HER THAT
SHE MUST NOT GET ENOUGH SLEEP. BUT THAT IS NOT TRUE AT ALL . SHE
HAS A VERY GOOD JOB, SHE GOES TO WORK COMES HOME AND GOES TO
SLEEP FOR A WHILE ,THEN GET'S UP AND DOES A FEW THINGS AND THEN
BACK TO BED. AND SHE GET'S PROBABLY 9 OR MORE HOURS SLEEP BEFORE
WORK . SHE WORKS AN OFFICE JOB SO IT'S NOT LIKE SHE IS WORKING
HER BODY TO HARD.
PLEASE SEND US SOME INFORMATION ABOUT THIS DISEASE BECAUSE I
DON'T KNOW MUCH ABOUT IT OTHER THAN THE FACT THAT HER DAD HAD IT.
THANK YOU FOR YOUR TIME
REESA DAVIES
Libra5150d@aol.com