Narcolepsy? I need help before school starts again!

[tessa7807]

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 (adderrall) 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 (adderrall) 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!!

[tessa7807]

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.  

[KatEyes]

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.

[idesofmarch]

Look up Provigil-   you should get a sleep study done too. If you have trouble with your doctors find a new one.

[aunt95leecia]

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.

[Lori611]

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.

[Jules77733]

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.

[Jules77733]

By the way...are you seeing a sleep doctor/ENT, consistently? Why are you seeing a psychiatrist? Adderall (adderrall) 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?

[randomvisitor]

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.

[Jules77733]

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?