Do you have any other weird symptoms when you sleep? Also, did you do the MSLT after getting a full night of sleep (I'm sure you did but I know that is important). I have narcolepsy and while it ***** there are ways to manage it. I still need naps throughout the day but my medicine has REALLY helped.
Some other symptoms of narcolepsy:
-cataplexy (feeling weak/loss of muscle tone after strong emotion especially laughter)
-sleep attacks (uncontrollable urge to sleep during the day)
-hypnagogic hallucinations (intense dream like state on falling asleep or waking)
-sleep paralysis (inability to move upon falling asleep or waking)
-microsleeps (falling asleep for a split second, usually continue with whatever action you are doing without interruption)
Wow! All but the micro sleep...how do you manage it? And what med works best for u? Thank you!
I take Nuvigil every morning and Ritalin throughout the day when I get tired. The good thing about Nuvigil is it is long lasting unlike other stimulants. My sister (who also has narcolepsy) turned out to be allergic to Nuvigil so she just takes adderol all day and she is having a really hard time managing it.
Probably the hardest thing about narcolepsy is getting other people to understand the condition. Most people will just think you are lazy and unmotivated. They will tell you to just suck it up and get out of bed. For the longest time my dad would tell me to that if I went out and did things I wouldnt be sleeping all the time - he never noticed that I would fall asleep anyway. The thing to remember is this is a Neurological condition - basically the inability of your brain to regulate sleep/wake cycles. It doesn't matter how much you sleep, your brain will still think you are tired and need to sleep more.
A lot of people struggle with cataplexy too. I don't know how bad yours is but that is another thing most people don't understand. I've heard of narcoleptics getting arrested for public intoxication but in reality they were having a cataplexy attack. Some people will stumble around and slur their words. Other people will go completely limp and fall. With me it is usually in my face/neck. My eyes will get extremely heavy and my face goes slack and my head drops forward or becomes extremely hard to hold up. I also get weakness in my arms and knees. My sisters knees tend to buckle when she laughs and she will usually fall. She has also dropped things because her arms just give out. They usually prescribe anti-depressants for cataplexy and that does help for most people. I can't really comment on how much it helps me because I have been on them for so long I have nothing to compare it to.
Just remember that while narcolepsy is a lifelong condition, it is not progressive. It is not going to get worse over time and it is not going to kill you.
When will you hear the results of your MSLT?
Thanks for the info and insight. I get that weakness under stress or when I laugh. My knee will buckle and I will loose my balance and stumble.
I am on vyvanse for ADHD that I was only diagnosed with a few years ago. I am a teacher and I really wouldn't say it was ADHD, more like sleep deprivation. Also I am on cymbals for the depression after not being diagnosed for so long. Just was diagnosed lpr a few days before.
I get the same thing since I resigned after giving birth. I have too much time on my hands to think about things. Got a part time job just for that reason. Now I'm busier and just as exhausted!
I get the results in 10 days. Thanks again
Hope things work out for you.
Hello, community! I've had narcolepsy since age 11, though not diagnosed until age 36, and forced to retire on disability at age 42. That was 16 years ago, and still trying to cope with it. Current treatment involves Adderall and Effexor to try and eliminate Excessive Daytime Sleepiness, and Xyrem at night for disturbed sleep pattern and cataplexy. I was a research patient in the clinical trials of both Provigil and Xyrem. Hope I might be able to help some other People With Narcolepsy through sharing my experiences.
Hello and hope you are doing well.
Understand your predicament. Narcolepsy is diagnosed by the sleep onset REM episodes (SOREMs), wherein the person goes into the dream phase or REM cycle soon after sleep onset. This is evident in the Multiple Sleep Latency Test (MSLT). Narcolepsy is characterized by excessive day time sleepiness, sleep paralysis, cataplexy where the person has episodes of loss of muscle function while awake, hypnogogic hallucinations and automatic behavior. It can however be regulated with medications.
Hope this helped and do keep us posted.