i'm 43 i started showing signs of narcolepsy and cataplexy 15 years ago and it progressed quickly. I was falling asleep while working only to me it was a loss of time when waking i was still doing what i was doing only i was confused or i'd be having a conversation and would start making no sense.I would have a hard time concentrating,and would have this weird but strong feeling in my head. People have often asked me if I were high because they didnt know me. with the cataplexy at first when i would get a strong emotion mostly fear or excitement this rush would go through me and my knee would buckle as it progressed i would fall down. while falling asleep or dreaming if something scared me i couldnt wake up i felt everything i would dream that i woke up and had a hard time distinguishing that it was a dream and not real at times in dreams i feel everything it seems so real.I am telling you my story because I went to a doctor to find out what was wrong after explaining everything to him he told me that my symtoms didnt match any medical reasoning and that i had a history of depression and that depressed people often imagine illnesses and that i needed to start taking walks. wwwroooong. of course because he was my dr i listened and got more depressed my job at the time was as a fabricator running a shearer- drill and punch press long story short i fell asleep and my head nodded sending my hair into the shaft of the drill. I was lucky I lost my hair and tore my scalp but I kept my life. If you ever have things happening that you know are wrong never let anyone tell you that its not happeneing get two or three opinions. unfortunately for me my narcolepsy progressed to severe during this time and the medications dont work for me and i cant help but wonder if i would have gotten another opinion if the meds may have helped. living with narcolepsy is very hard nobody really understands they think you are lazy that you can control it and they alienate you or they make fun of you. or they say they understand but really they dont unless you have it you cant understand what it is like. i went from being overly thin my whole life to being overweight because when i eat i want to sleep my energy is gone cause im constantly tired and people thinks its funny to excite you just so they can watch you but they dont realize how much it takes out of you it totally drains you.

I'm 45 years old but can remember having this problem from about the age of 6/7, I use to keep myself & my parents awake,because I had this fear of 'dying in my sleep,'I can be 'trapped' asleep but hear everything that is going on around me,eg.partner snoring,tv on,kids playing,I usually watch the start & end of films but only hear the bit in the middle,I can scream at the top of my voice but no one hears me, as I've got older I've learnt to live with it.I've even trained my partners to wake me up,instead of panicking & screaming while asleep,I have to calm myself down.I have this quiet,low bellowing noice I can make & this alerts them to shake me awake.I have also found that if I'm having a stressful time this problem escalates.I've been to my GP but he's just poo poos it off as nothing more than a whim.Could this be a form of Narcolepsy?

Im 17 and have suffered from depression for a long time, I used to sleep alot because of depression and then I started using prozac, that helped for a while but now I'm off it again. I find myself every afternoon wanting to sleep or feeling VERY tired. At one point i thought it was because i was dehydrated but its not that. My friends all think it's rather strange that i have to go to sleep in the day. (They all say im just lazy!) I shouldn't be so tired at just 17. Whats wrong with me?

Im 20 & after i eat (10 mins or so, daytime) I fall asleep. I would cope better if i were at home but its happening while im comming from uni, on the buss & trains etc. Plz, is there something wrong with me? Can somebody ans, plz?

I went to the doctors rescently worried about my sleeping. i go to bed no later than 11 every night and sleep right through to 8am the next morning, and its always a solids night sleep. For the last year iv found it extreamly hard to get up in the morning. The last few months i was taking pro plus first thing in the morning to try and perk me up. I get 40 minutes for lunch, i used to go lye in the back of thr car and get 35minutes sleep in. The during most of the afternoon id struggle to keep awake, falling asleep more often than not. At worst i was having the maximum of 8 pro plus tablets a day and drink red bull but still feeling sick with exhaustion. When i fell asleep driving home one day i decided to go to the docs. I was abit hesitant of going as my dad kept on telling me it was in my head, that i was lazy and that i shouldnt go out on a sat night (even thought i was always in by 12 and never drink as it just makes me more tired!). But i new it wasnt that. On my first appointment i had blood test taken, for just about everything i think the amount of blood that was taken!, these came back as normal. After several long talke with my doctor and a physcaitrist iv been diagnosed with CFS, Chronic fatigue Syndrome. Since being diagnosed i was advised to do a small amount of excersise everyday and eat more regular and more balance meals. Im just under average weight for my age and height but quite frequently went with out either my breakfast or tea, now i eat all three meals every day and also i walk on my lunch break now, instead of sleep!, and i can feel the different already. The doctor advised i should hopefully just grow out of it!! i hoping this doesnt take to long.

im 18 have got a 3month old daughter but i sleep sound and undisturbed all night as does my daughter so its nt lack of sleep if im feeding my daughter i fall aslepp or if i jus stop doing things and sit dwn within minutes im asleep!!!!
its very worrying!!!!

I am sorry that my message is long :)

I am a 37-year-old woman with Narcolepsy. I started to have symptoms at least 10 years ago. I experience more symptoms then most people diagnosed with Narcolepsy. I experience the excessive day-time sleepiness, cataplexy (sudden loss of muscle control/falling down "paralyzed" for several minutes), hallucinations (physically waking while the brain is still dreaming or beginning to dream before I fall asleep), sleep paralysis ( waking up but my body is asleep and I can not talk or move), disturbed night time sleep, and constant difficulty with concentration and with word retrieval when speaking( I think I am saying St. Louis but I say Seattle.) This has been a debilitating to me and dramatically changed the course of my life. But I have a great support system and I am able to manage my symptoms with the help of medication.

Prior to my diagnosis my doctors tested me for just about everything and I thought (as did my family) that I was either a hypochondriac or I had cancer, which had recently taken a family member from us. As part of the testing to rule out various conditions I had a sleep study to determine whether I had Sleep Apnea. We (MD and I) were shocked by the results which showed that I most definitely had Narcolepsy.

I have several health issues so I had various symptoms related to those conditions that may have masked the Narcolepsy symptoms. No one in my family had Nardolepsy so it was not even considered on the list of conditions we (myself and all the MDs in the practice) were trying to rule out. By ordering a Sleep Study to check for Sleep Apnea— although I did not snore and my husband never saw me stop breathing while sleeping— my doctor was able to diagnose Narcolepsy. I was able to get with a specialist and start medications to manage my symptoms practically overnight.

I had not realized how anxious I was until I received the call with the results. Shortly after completing the call I jumped into the shower and was shampooing my hair. As I was shampooing my hair I caught my self singing over and over, "ITS NOT ALL IN MY HEAD.. ITS NOT ALL IN MY HEAD." The anxiety of not knowing why I was constantly sleepy to the point that the desire for sleep was painful had been much worse than I had realized.

If you suspect that you have the symptoms of Narcolepsy ask your doctor to order a Sleep Study OR to clearly discuss with you the reasons they do not feel the test is need. If they don 't feel it is necessary and they don't feel you have Narcolepsy ask them to explain the reason they feel that way.

You need to be upfront with your doctor but remember that they have medical training and knowledge that we (patients) do not. I have researched various medical treatments for my conditions and have respectifully presented the information to my doctor. When he is presented with the research he can answer my questions better then if I had told him about something I may have read on the internet.

IF YOU FEEL YOUR DOCTOR IS NOT TAKING YOUR CONCERNS SERIOUSLY IT IS TIME TO FIND A NEW DOCTOR.

Case in Point:
I had Neurologist who had seen me over the years for worsening symptoms (chronic pain/tremors/concentration issues) and was dismissive of my concerns. At my last appointment he told me I had a "nervous personality." and that is the cause of my conditions.

I failed to stand up for myself by not voicing my concern that he was treating me like a hysterical female and that there was nothing wrong with me. I should have requested an evaluation with a different doctor.

Because I didn't confront him I suffered for 5 YEARS due to a slow growing, benign BRAIN TUMOR! I am truly blessed and unbelievably lucky that it was not malignant. It was tumor that arises from the tissue that surrounds the brain on the inside of the skull. This tissue holds the cerebral-spinal fluid which protects the brain. The tumor wasn't in the brain but it was pushing on the brain therefore no one area of the brain was injured. My brain was being pressured in all areas therefore it led to various symptoms occurring all over my body.

I probably wrote more than I should have but I know how much good sleep hygiene can impact your health and your quality of life. While there is no cure for Narcolepsy there are numerous medications that can control the symptoms that I and others have successfully used over the years.

Remember to be your own advocate, if you are concerned you should respectfully voice them to your doctor. I have found that when I call to make an appointment regarding a specific concern it is best to let the scheduler know that you want to see the doctor to discuss a health concern with him. You do not have to tell them what it is but this allows the staff to schedule you in an appointment slot that is longer. With a longer appointment you should not feel rushed and the other patients will not have their appointments delayed.

Best of luck to all of you.

I AM 85 Yrs OLD,I OFTENHAVE MY BREAKFAST AND GO BACK TO BED,I DONT GET IN THE BED I JUST LAY ON TOP AND LEEP FOR ONE HOUR.
AT 2.30 IN THE AFTERNOON I AM BACK ON THE BED AGAIN.NOT EVERY DAY.IS THIS DOWN TO MY AGE.I DO TAKE VARIOUS TABLETS THAT CAUSE DROWSINESS.

i am 17 years old and was diagnosed with glandular fever around 5 years ago and wasnt well.since then i have been really tired.i can come in from college and go straight to sleep and stay there until the night then wake up have some food and go back to sleep. around 2 years ago the doctor said it could be reaccurent glandular fever but he said i dont have it but may just be getting the symtoms.do you think this is correct

no matter how much i sleep im still really tired. my daugher likes to lay on my chest when she is watching a movie and before i know it im asleep. im 25 am i narcoleptic