What is Narcolepsy
The main characteristic of narcolepsy is overwhelming excessive daytime sleepiness (EDS), even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy o...
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Hello all! I was hesitant to join this group at first because as of now I do not have a confirmed diagnosis...
I went to a new doctor on Monday. Up until this point I had been still seeing a pediatrician because they told me I could stay until I finished college but it just started getting a little weird so I wanted to change even though I still have 1 more year of school left. I have been experiencing what I now know to be symptoms of narcolepsy for several years but it has been getting increasingly worse over the last year. My pediatrician had tested me for mono and other such disorders over the years but never came back with anything. When I went to my new "grown up" doctor on Monday I had to receive a full physical since it was my first visit. (I am awaiting the results of the blood work and such)Upon describing my symptoms of what I was experiencing to him he right away brought up the possibility of narcolepsy and immediately scheduled me for a sleep study at a sleep clinic. I will be doing this on the 13th. After talking with my doctor and doing research online I have determined that I experience the following: 1. Extreme Daytime sleepiness I take frequent naps during the day and feel as though at any point I could fall asleep. It is very difficult for me to sit through lectures or watch tv without falling asleep. Although… oddly I have a hard time falling asleep at night. I feel as though I almost function better at night time. I typically can not fall asleep until 3-4 am. Then if I do not have anything to do the next day where I have to get up I can sleep until 3-4 pm, waking up for a few brief periods in-between. Then, even when I wake up I am still tired and can still take naps into the evening. I have a very difficult time waking up early due to the fact that I can not fall asleep at night. I have had to strategically schedule my classes so that I do not have to get up as early or so I can take naps... 2. Sleep Paralysis This happens to me VERY frequently. An example that I can give is the other day my little brother, who is 10, came in my room around 1 pm while I was sleeping. I heard him open the door, walk across my room, and I was aware that he was standing by my bed but I could not wake myself up. I was thinking to myself "GET UP! Why can't you wake up?" But I couldn't. It is always very scary and I describe it to be in like a comatose state. This has also happened to me while the tv was on and I can hear and identify what show is on and what they are saying but I can not wake myself up, move, or open my eyes. 3. Hallucinations I feel really weird talking about this because it makes me feel crazy (which I assure you I am not) and I do not know if it is normal or associated with narcolepsy. This usually happens to me as I am falling asleep or as I am just waking up, and it is usually very scary images. Once I even thought that someone was touching my arm. I think maybe I start to dream before I go to sleep or something...it is really weird. For an example, although this happened upon waking up...I was sleeping and was experiencing sleep paralysis. When I was finally able to wake myself up I opened my eyes and saw a scary face with red eyes right by my face. I closed my eyes again and then opened them and it was gone. It left me wondering, "was that a dream? Did that just happen?" It was very scary. 4. I jerk a lot in my sleep. I have even jerked and then woke myself up from it. 5. I have frequent nightmares which sometime lead to night sweats. 6. I dream a lot! Even if I am only asleep for a few minutes and someone wakes me up, I will be in the middle of a dream. I read online about cataplexy, and I do not believe that I experience this. Although my muscles and joints are always sore, I never lose function of them or it never comes on suddenly. Isn't that what cataplexy is, or am I confused? I am not sure if I have narcolepsy...I was hoping maybe other people who have a confirmed diagnosis could maybe give me their opinion. Another thing I was hoping to get opinions on was the drug Ambien. My doctor prescribed this to me and told me to take it every night up until the sleep study. However, my mom is very concerned about me taking this because she has heard of horrible side effects associated with it. Even though I am 21, she has "banned" me from taking it, and I haven't as of yet. Has anyone ever taken it? Does it have side effects? Does it work? I guess I will know for sure if I have narcolepsy after my sleep study on the 13th. Although my doctor did say that "he would bet his bottom dollar that that's what it is." I guess I am just nervous and confused and just anxiously awaiting the 13th....if anyone has any advice or opinions I would really appreciate it! Thank you so much for taking the time! God bless! Posted on 07/03/09, 01:07 am |
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Hi, sorry to hear you're having problems, from what you say it sounds like narcolepsy.
I can get to sleep at night initially but I then wake up after about two hours and then can't get back to sleep. I find any kind of monotony next to impossible to stay awake through. So any kind of transport, boring TV, boring conversations, anything like that and I'm gone. I don't find I feel the need to sleep all day. It's more like feeling really drained and weary. I find the need to sleep kicks in quite quickly and there's not a lot I can do to stop it, I have to sleep. I'll usually sleep for about half an hour to an hour and not much will wake me. You haven't mentioned if you have any problems whilst falling asleep. Do you find that you get sleep paralysis and hallucinations whilst drifting off into sleep?. Quite often the presence of cataplexy makes it easier for a doctor to diagnose narcolepsy, however, there are a lot of people who have narcolepsy without.. There's also a sleep disorder called idiopathic hypersomnia which has similar symptoms. I think I would be right in saying that every person has their own unique set of problems relating to their sleep disorder. Just read through some of the posts on here to get an idea. Diagnosing sleep disorders is difficult and your doctor or sleep disorder specialist is going to have to see the results from your overnight sleep test and MLST's to give you an accurate diagnosis. Hope you find out what you need to know on the 13th. 
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Hi and welcome to the group. I hate to say it but sure sounds like narcolepsy to me. As Andrew said we all are alike yet we all are so different with our symptoms. The only concern I have for you is the Ambien. I have never heard of anyone taking a sleep aid up until their sleep study,usually you have to stay off of them for 5-7 days. I would call the sleep center and ask them about this.As for the catalepsy a lot of us didn't think we had it either but after reading different discussions on it we(well I) have found it to some degree. I am lucky as mine is mild. Don't be nervous about the sleep study it is painless.
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We frequently get visitors who aren't diagnosed yet. Whether you meet diagnostic criteria or not you definately share many of our concerns. ...I had the joint pain but I learned that that is a symptom of sleep deprivation. I turned out to have sleep apnea as well as narcolepsy. I am in the process of trying to start a monthly support group in Columbus. My son who is 26 is going through the diagnosis process now and there are a few more of you, younger folks with narcolepsy around the area. Read through some of our older posts and see if things sound familiar to you. We have had all kinds of discussions about cataplexies....twitching eyes to complete colapse. I have only had one "real" one 9 years before I was diagnosed-just lost use of my left leg suddenly and for about 15 minutes. I think someone on this site has experienced everything that could be narcolepsy and or read everything there is to read. And I feel there is real caring so welcome!
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Oh- Read The Little Sleep by Paul Tremblay. (if this were a live group I imagine many members would through a handy pillow at me right now)
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Thanks everyone for your thoughts!
My mom actually said the same thing about taking the meds before the sleep study so I called my doctor back to talk to him about it. He said that it is actually quite the opposite, that if I do not regulate my sleep schedule before the studt I could skew the results. He said that if I had a poor nights lseep the night before the study I could actually get a false positive just because I was overly tired...I am not sure how I feel about that but that is what he said. I haven't taken the Ambien yet but I am getting a little nervous that if I don't start taking it, it might affect the results. Currently I am not falling asleep until 3-4 am and then sleep frequently during the day. Do you think that I should ask another oppinion about this issue? Maybe call the sleep clinic? Or should I just take his word?
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i'm sorry but i do think he is wrong, you need the sleep study to show your 'usual' pattern of sleep, to show what you have been suffering from all this time. if you 'regulate' your sleep pattern it will not show any problems, therefore you will not get a diagnosis.
sometimes sleep centres say you can carry on taking medications that you are normally on, but only if they will not have an impact on your sleep study results. you haven't said what kind of doctor this is, but he does not sound like a sleep specialist, please contact the sleep centre directly, they are the specialists when it comes to doing this test, you should have had some information given or sent to you by them.
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Ok DGgirl i have found some evidence for you:
Patient preparation is important so that the patient sleeps naturally. Patient instructions include the following: * Maintain regular sleep-wake rhythm * Avoid sleeping pills * Avoid alcohol * Avoid stimulants, including medications for narcolepsy * Avoid strenuous exercise on the day of the PSG The paragraph above is taken from this article: http://emedicine.medscape.com/arti... Although Ambien is not a stimulant, the article does say they want you to have your 'regular' sleep-wake rhythm, and it does advise against taking narcolepsy medication, or sleeping pills as these things would all affect your 'regular' sleep pattern. Check for certain with the Sleep Centre, and if they confirm you shouldn't take the Ambien, then i would tell your doctor if he's got it wrong, he may be sending other people for expensive sleep studies and them getting incorrect results because he has given them incorrect advice.
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