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Avatar universal

Narcolepsy? I need help before school starts again!

Hello,

I am 21, in college, and my grades are suffering from some sort of sleeping problem.  I have been having trouble sleeping for the past 2-3 years.  I am constantly tired and usually sleep 12-20 hours a night (often causing me to miss class).  I wake frequently during the night, but am never awake for more than a minute at a time.  I have also had problems with waking up screeming after a violent dream (which I almost always rememeber) for the past 10 years.  I can recal my dreams almost everynight and often feel that they are real. I am ALWAYS tired, no matter how much sleep I get.  I occasionally fall asleep in class and usually have an extremely hard time focusing. only times I don't feel tired are when I chug caffeine.  I hate having to poison my body with unhealthy energy drinks, etc, but it seems to be the only way to stay awake (sometimes they actually make me tired). I exercise regularly (this doesn't perk me up either, I'm usually ready for a nap right after working out), drink occasionally (2-3 times a month), but I just don't think that this could be the sole reason for my unusual sleeping patterns. [Side note: A little over a year ago I was diagnosed as Bipolar and am currently taking meds (celexa & wellburtin).  My psychiatrist doesn't really seem to care that I sleep so much and has basically given up after switching my meds a few times without any improvement in my sleeping.]

A few months ago I had a polysomnogram and multiple sleep latency test to test for narcolepsy.   I used to think the maybe I had ADD (I am still curious about this), but I'm now starting to think that my attention problems are due to sleeping issues. The specialist I went to said that my results showed that I didn't have narcolepsy and her only suggestion was to try to get on a more regimented sleep schedule.  I told her that I have been trying to do that for a long time and it didn't seem to be working, but she didn't seem to care and basically wrote me off as being a college student who just parties all the time, thus making it my fault for sleeping 12-20/day. I am wondering if anyone has any better suggestions than the specialist I went to (she basically told me the same thing my mother tells me, and I feel like there is probably something out there that I could do that would further help me).  

I really need to get this whole sleeping sleeping stuff as soon as possible because school is starting up in 2 months and I don't want to have to go another quarter with suffering grades.  

Another quick question...This school year I tried my friend's Adderall a handful of times, and I could focus really well for a while, but then I would become extremely tired and have to take a nap.  Does anyone know why Adderall would make me so tired?  The times I am awake I'm unproductive and never seem to finish anything (trying to study is almost impossible).  


THANKS!!
13 Responses
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Avatar universal
I just realized that I forgot to add that I also have hallucinations when I fall asleep or wake up.  They are frightening and it sometimes feels like I am frozen and cannot move.  
Helpful - 0
Avatar universal
I am sorry to hear you do not have doctors who are willing to work with you until there is more satisfactory resolution of your problems.

Having sleep that is not restorative can cause about all of your symptoms. Do you have a copy of the complete results of your sleep study? If not, it would be in your best interest to keep a personal file of all your test results. Did it mention anything about limb movements? Did you have any apnea events at all? Please go over those results and see for yourself what it says. It is not unusual for one's sleep in a sleep lab to not be representative of a normal night's sleep, since the environment is new and the wires and equipment can make it hard to get comfortable. There's so much unanswered in regards to those results, like how long did you sleep, was your sleep architecture normal (% of each sleep stage), etc.

Maybe a new sleep doctor and/or another sleep study would be beneficial. Or at least get a second opinion on your existing test results. You could very well have narcolepsy, but I had the same symptoms as you and it was a result of years of untreated OSA and PLMD.

Please do not stop now at seeking answers. There are doctors who will hang in there with you if they know you are serious about seeking real answers.  Ideally one could be found on recommendation of an acquaintance who is a patient, but that's not always feasible.
Helpful - 0
172715 tn?1285494490
Look up Provigil-   you should get a sleep study done too. If you have trouble with your doctors find a new one.
Helpful - 0
Avatar universal
I have "MS"  & I thought Ii was sleeping all night,but I was always tired,I would fall asleep at Work even while I was Driving! I could pull over & take a 15 minute "power nap" & feel so energized. I had a Sleep Study done & I was told that I didn't have Sleep Apena, but I sleep so SOUND!!
I was still falling asleep & tired all the time. I was put on Ritlan,I argued with my Dr.& told him wasn't taking this, well I do take Ritlan twice a day to keep me from falling asleep. I tired Provigil & it didin't work for me,but I have "MS" also.
Helpful - 0
Avatar universal
I have the same thing. Seems like you suffer from sleep paralysis, a common symptom of narcolepsy, but sometimes one has nothing to do with the other. During sleep paralysis, you're going through REM sleep at the wrong times, either at the onset of sleep or when you're coming out of it. During REM, your body naturally paralyzes to keep you from sleepwalking, but if it happens at the wrong times you may wake up while your body is still unable to move. This is usually accompanied by hallucinations, and many people who have sleep paralysis also have lucid (very real) dreams, in which they know they are dreaming. Because of the disruptive nature of the sleep cycle, people with this disorder may not feel rested during the day. I know I can personally sleep for 10-12 hours and take a 2 hour nap in the middle of the day. The sleep feels great, but when I wake up I'm usually never full of energy.
Helpful - 0
534785 tn?1329592208
Definitely look into Provigil, as idesofmarch mentioned. It's a drug approved by the FDA for the treatment of excessive daytime sleepiness associated with narcolepsy and obstructive sleep apnea, and it has been widely acclaimed for having few side effects. In fact, I believe they're looking into Provigil as potentially offering cognitive enhancement to patients on the drug.

If you have any questions about Provigil, feel free to ask me--I've been taking Provigil daily for excessive daytime sleepiness caused by obstructive sleep apnea since September 2007.
Helpful - 0
534785 tn?1329592208
By the way...are you seeing a sleep doctor/ENT, consistently? Why are you seeing a psychiatrist? Adderall won't help you if you do have narcolepsy...it sounds like you might need a repeated polysomnogram. Keep going to specialists until you find one willing to treat you/retest you. What did your original sleep study results show? Even if they didn't show narcolepsy, did they indicate that you had any kind of sleep disorder, or that you're able to easily fall asleep at any point during the day?
Helpful - 0
Avatar universal
Wow, we should start a support group! I also am 21, a college student, who is hoping to be a neurologist/psychiatrist. But studying is ridiculously hard because I suffer from excessive dreaming and dream recall! I have very vivid, detailed dreams and I remember too many of them since when I was a child until last week! I wake up every morning my brain is tired because I just spent the night thinking up crazy, detailed dreams! Of course I have loss of attentiveness and concentration the whole day, and it doesn't matter how much I sleep it makes no difference! Nyquil, melatonin pills, sleeping pills described by a psychiatrist after a sleep study showed extra electricity in my brain- have all done nothing to decrease the dreaming. I have no psychological disorders, no history of abuse, I have regular diet, regular physical activity, I do not even drink at all and absolutely no drugs. I am as normal as one can be, yet I am not! I am in a never-ending quest with you as well to know what is going on, and how to get treated if i ever want to be a doctor myself! (I do'nt think they would understand my situation at a med school interview without proper documentation.) I am going to see a neurologist and do a more proper sleep study. Hopefully, this sheds some light on what to do.

In the meantime, I have been researching lucid dreaming and some say it makes u more restful the next day. I suggest u begin practicing it. Itmight be somewhat useful who knows! I have actually done it in the past, without knowing it was called lucid dreaming so it does work.

Good luck to us and others out there who share the same crazy, weird condition! And thanks to those who support and understand that something that sounds so simple and small like excessive dreaming actually makes a terrible impact in one's life.
Helpful - 0
534785 tn?1329592208
Hah, I've considered being a neurologist (or a neurosurgeon), too! Of course, that'd require me taking the MCATs and applying to medical school.....there's no way I'd be able to retain enough information to actually pass the MCATs with the condition I'm in! What's your undergraduate major?
Helpful - 0
Avatar universal
My first suggestion is go to another sleep specialist. I have seen 6 physicians and have had 5 sleep studies done in the past 6 years just to get my correct diagnosis. It's a long story but with my current physician I learned about things that could have biased my previous sleep studies, that my previous physicians neglected to mention. For instance were you off all your medications and slept from 10-7am every day for over a week?  I went form being diagnosed to Sleep Apnea, to Idiopathic Hypersomnia, to Narcolepsy and now back to Idiopathic Hypersomnia. Those are not the only sleep disorders that are known, for instance you might have Delayed Sleep Phase Syndrome or Chronic Fatigue Syndrom . And whoever said that adderall does not treat Narcolepsy is wrong. As far as why you were tired afterwards really depends on when you took it, how much you took, how much sleep you got the night before. For how long Adderall works depends on the half live. Stimulants like those are not going to stop you from always being tired. They just work for the amount of hours they are meant to work.

But definitely go to another physician because once you get your diagnosis, your physician can figure out what type of class of medications would work best for you. The way Provigil, Adderall,  and Xyrem work are all very different (there are other medications besides these too). If you have sleep apnea you might need a CPAP.

Don't give up! I am glad I didn't because I finally found a physician I am happy with.

Oh, and also get your thyroid checked as well as your iron. Anemia and hypothyrodism can cause fatigue. DIabetes is also linked to sleep disorders

But I think that your Bipolar Disorder may have causes your sleep issues. There are many mental illnesses that are known to cause sleep fragmentation.
Helpful - 0
534785 tn?1329592208
Wow...this thread was resurrected after 2.5 years and I happened to notice I was one of the last people to post in it while looking for information in this forum.

Here's the irony, folks. When I said, "there's no way I'd be able to retain enough information to actually pass the MCATs with the condition I'm in!" in my last post in this thread, I didn't know what my condition was. I just had a third sleep study done two weeks ago and it turns out my condition is...NARCOLEPSY. Does fate have it in for me, or what? Now I can really relate to tessa7807. It's just a shame my earlier sleep studies didn't clearly indicate narcolepsy sooner as my sleep doctor thinks I've had it since high school.

deseablev--how did you get diagnosed with sleep apnea, then idiopathic hypersomnia, then narcolepsy? That's actually the order of my diagnoses! Except I'm pretty sure narcolepsy is the real diagnosis since I had REM sleep in 3/5 naps. What results did you have in your sleep studies?

tessa7807--Give Nuvigil a shot. It works better for me than Provigil, although both are great. Nuvigil is just faster-acting, longer-lasting, and with fewer side-effects, in my experience.
Helpful - 0
Avatar universal
Hey, I so happen to stumble on this thread while trying to search for some answers. What are your symptoms for narcolepsy? I have always had vivid dreams.. ever since I was 3 or 4. I fall asleep in class almost everyday (actually throughout my undergraduate career. I always have to learn the stuff on my own because I can't stay awake in class). It doesn't matter if I sleep 10 hours or 12 hours a day. I can't pay attention in class and start thinking about other things.. and before I know it, 10 mins have passed. Does it sound like anything you have?
Helpful - 0
534785 tn?1329592208
I sleep at least 8 - 10 hours per night (sometimes as much as 15 hours!), but as you mentioned--that doesn't matter. I still feel tired throughout the day. I wake up feeling tired, then feel generally fatigued throughout the day. At certain points during the day, the fatigue will suddenly intensify...like it's taking most of my energy just to stay awake. This eventually goes away, but it can be triggered by activities like reading, driving, watching TV, or sitting in class. I never used to experience any obvious sleep-attacks, but I think this is changing. I fell asleep for half a second in an MRI machine a few weeks ago after sleeping well the previous night and knew that was narcolepsy. Anytime I don't sleep at least 8 hours the night before, I will easily begin to nod off during lectures.

During college, I began developing concentration issues, but I always managed to buckle down and finish my assignments and coursework. In graduate school it worsened. Not only was my concentration worse, but I struggled to think as quickly or as sharply as I used to, so coursework took me a lot more time to complete, and I found myself handing things in late--not on purpose, but because I thought I could complete them in a certain amount of time and wasn't able to. It's really hard to focus, and I have no doubt this can be attributed to narcolepsy, as being fully awake is important for maintaining focus and functioning at your best. I always learned things on my own, too, because I had trouble staying awake in class and concentrating.

I mentioned the vivid dreams because I've taken classes about sleep structure and function and it struck me as odd when my professor told me that most people can't remember a single dream when they wake up. I usually remember at least one, if not more, and I remember them in great detail.

If you find that you're on a good sleep schedule where you're sleeping at least 7 - 8 hours per night and you're feeling fatigued throughout the day, narcolepsy could be a possibility. I really began considering I had it when I started experiencing sleep paralysis for the first time this past year in addition to some random muscle weakness in my arms that would dissipate after 30 seconds (likely cataplexy).

Let me know how things for you!
Helpful - 0
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