NICUnurseang: Questions concerning narcolepsy...

Discussion in 'Fibromyalgia Main Forum' started by BobinGermany, Feb 2, 2007.

  1. BobinGermany

    BobinGermany New Member

    I was reading your post in the thread concerning Xyrem. I see that you have narcolepsy. If you don't mind could you answer a question or two? I may have it but I am not sure, I guess I will need to do a sleep study to find out. My question is that one or two times a day I get am intense urge to sleep. I have to hold my head up with my hands or my face would fall on my desk. It seems to last for maybe 20 - 30 mins. I can manage to stay awake but it is almost impossible. This is not blood sugar induced as I have it at any time. And have checked my blood sugar when it happened. When I was working around 7 years ago I would sometimes get this feeling when talking to a customer on the phone and afterwards have to ask a colleague what I had said to them. Are these symptoms of narcolepsy? I don't sleep good at night... usually around 4 1/2 to 5 hours and much of the time have very vivid, scary dreams.
    Any help would be greatfully appreciated!
    God Bless,
  2. BobinGermany

    BobinGermany New Member

  3. NICUnurseang

    NICUnurseang New Member

    Your symptoms sound like they could be related to narcolepsy or idiopathic hypersomnia but the only way to know for sure would be an overnight sleep study with a nap study (MSLT). Unfortunately a lot of the symptoms of narcolepsy are often overlooked as they are attributed to other things or could be linked to another sleep disturbance in general. Chronic sleep deprivation can cause a lot of the same symptoms as narcolepsy, although a lot of the narcolepsy symptoms are worsened by the chronic lack of restorative sleep! What a vicious cycle!

    The primary symptoms of narcolepsy are excessive daytime sleepiness, cataplexy, sleep paralysis, and hallucinations, as well as automatic behavior. Some people have all of the symptoms, some just have one or two. Other common problems that most narcoleptics have is that they don't sleep well at night. They frequently may dream all night long, have vivid nightmares, have trouble telling dream from reality, frequent awakenings, and have trouble getting up. This unrestful sleep contributes to the daytime sleepiness also because you basically start the day on empty! Basically when narcoleptics nap they go into REM sleep in less than 5-10 minutes instead of around 90 minutes like normal people. If you learn about REM sleep & behavior you find that that is when you dream and so that can explain a lot of the behavior associated with narcolepsy.

    Everytone that has narcolepsy has the daytime sleepines and is usually what triggers doctors to look at a sleep study but amazingly enough before I was diagnosed I never said I was sleepy, just fatigued! Yet I always needed naps because I just didn't have the energy to do anything! Frequently even when narcoleptics are well treated they are bound to go through life drowsy and never at a fully alert state.

    Cataplexy is the loss of muscle tone usually triggered by strong emotions. It can be as small as weakness in facial muscles or your hands or it can be total body collapse. Can last anywhere from a couple of secs to several minutes.

    Sleep paralysis occurs when falling asleep or waking up and includes being awake but paralyzed and unable to move for a few seconds to minutes. It is very closely related to cataplexy and occurs because normally people would already be asleep when they are entering REM sleep whereas narcoleptics may have just closed their eyes.

    Hallucinations can occur with or without sleep paralysis and occur when awakening or falling asleep. They are usually very vivid and frightening and can be auditory, visual, or tactile. They are also related to the intrusion or REM sleep-dreaming into the real world.

    The times during the day where you get very sleepy for about 30 minutes sound like they could be sleep attacks. Narcoleptics have these frequently throughout the day but the average person could also experience them if they were severely sleep deprived. That's about how long mine used to last and I just felt like someone had zapped me. The talking on the phone and then not knowing what you said sounds an awful lot like autonmatic behavior. Basically your body is awake but your brain is shut off and asleep. This is also a common thing that we fight with every day. This often gets worse when you are tired and you may find that your memory and attention span also gets shot at the same time.
    Well, hope this was helpful, my best advice would be to get a sleep study done because it could be any number of things disrupting your sleep. I hope that it works out well for you! Keep me updated!
  4. BobinGermany

    BobinGermany New Member


    I just wanted to thank you very much for taking the time to answer my questions. I have printed it out so I can read it over again as I am a little out of it tonight. I plan to get a sleep study done soon. I would have had it already but I am waiting on surgery for my shoulders. Old age is not as good as it looks sometimes :)

    By the way I looked at your bio. I am really impressed at all you have done at such a young age! I wish you everything that you need to get back to school and get the nurse practitioner degree!

    Are you ever on the chit chat area? I would love to chat sometime.

    Take care,

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