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867808 tn?1239482070

Constantly tired

Hi, my name is Valerie and I am 16 years old and I am always very tired everyday. I always get enough sleep, usually about 8 or 9 hours of sleep, yet I always have to take a naps. These are not short naps either, these naps can last from 4 to even 6 hours long. Usually on weekdays because I have school, I go to bed at about 8 or 9 and wake up at either 5 or 6 because of school. Then, during school, I usually fall asleep during study hall or I have to go to the nurse to lay down because I am so tired and it is almost impossible to stay awake. When I get home, I usually stay awake until about 5 and thats when I take a nap until maybe 9 and stay up for a little longer and then go back to sleep again. Sometimes though, I won't even wake up until the next morning! On weekends, I usually go to bed at the same time I usually do on weekdays, but this time sleep in until either 7 or 8, then take a really long nap in the afternoon.

My life is seriously being consumed by sleep, it is affecting my grades at school since I can never complete homework and just living in general. This seemed to happen after I had mono about a couple years ago, and it usually gets A LOT worse around my period. I have been to a sleep doctor and had a sleep test done overnight and during the day when I take naps. They noticed that after about 10 minutes into my nap I was already in REM sleep, and they immediately diagnosed me with narcolepsy, which makes no sense at all since I don't just randomly fall asleep wherever I am. So we went to other doctors to see what they had to say, and basically would just hand over some pills to me that never helped me at all. I also had blood tests done and they can't seem to find anything. I don't know what to do anymore and I really need some help!

Thank you for taking your time to read this!
Valerie
13 Responses
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Avatar universal
WOW I have no idea but find this very interesting. I was going to say it is definately low iron. But this is impossible since you have already been to a doctor and had tests done. It sounds so much like an iron deficiency though..getting worse around your period. You should maybe go to another doctor and get a second opinion. If you find out what is wrong then please let us know on here. I wish you the best!
Helpful - 0
867808 tn?1239482070
Yeah, I remember hearing about other symptoms too for iron deficiency and they matched me almost perfectly! Pale skin, fast heart beat, low blood pressure...but the doctor said that the levels are fine, which is kind of strange. Well hopefully another doctor finds something, thanks for answering!
Helpful - 0
Avatar universal
Valerie, you mentioned reaching REM 10 minutes into a nap - in how many of the naps did sleep and in how many did you reach REM? Doctors usually don't diagnose narcolepsy casually, so that's why I'm wondering about the rest of the study, since reaching REM in one nap alone doesn't meet diagnostic criteria. Nothing else showed up on your sleep study, like apnea or limb movements?

I'm assuming you have been checked for anemia, diabetes, and hypothyroid. In the absence of any other medical causes, and in the presence of meeting diagnostic criteria for narcolepsy, you may want to consider that narcolepsy can manifest quite differently though with some commonalities. Seems you are giving your body what it asks for - naps. Let me ask you this - if you were to deny yourself naps for a period of days, would you still be able to say you don't fall asleep uncontrollably? I mean, I don't get irresistable cravings for chocolate, but then again, I have it so frequently I don't get a chance to find out if I could resist the urge.

I do hope you will soon find answers in which you can have a degree of confidence. I agree you should rule out absolutely every other possible cause of your excessive sleepiness before settling on narcolepsy as the sole culprit. Are you under the care of a neurologist? If not, you may want to have one review the data from your sleep study for a second opinion.
Helpful - 0
867808 tn?1239482070
I believe it was about 5 naps, and the doctor didn't say how many naps that happened in, he just said that it took about 10 minutes for me to be in REM sleep. He told us that my sleep study was normal (when I was sleeping at night) and there was nothing unusual there, and he specifically said that it was the naps that made it seem like I was narcoleptic. He also mentioned something else, upper respiratory resistance, which was very slight, so we went to see a doctor about that and that doctor told us it was because of one of my tonsils that were blocking the airway a little. There were also no limb movements either, he said everything else looked fine. Once we heard that it might be narcolepsy, we knew right away that that couldn't possibly be it because I do not fall asleep wherever I am without knowing it. We still have yet to see another sleep doctor.

Yes I was checked for anemia and hypothyroid, both which I do not have either. However, I don't think I ever had a complete blood work done, just one to check my iron and my thyroid, so maybe I would need to get a complete blood work to see if there is anything else. What you say about denying the naps is true, I feel like I HAVE to take a nap, so I would try to sleep wherever I am at (like study hall in school) but it is never a deep sleep like narcoleptics experience in a matter of seconds. If I don't take a nap I feel absolutely terrible, like I would get a headache or even my muscles start to twitch in my arms and down my body, which is really weird, I can't really explain it.

No, I currently do not see a neurologist, but I do see a psychiatrist because a long time ago I had a lot of anxiety so I take an antidepressant and now I feel fine. I have been on it for years now and we even told my psychiatrist if it could be side effects of the medicine but that couldn't be it since my extreme sleepiness started pretty recently, like I said after I had mono.

Thank you for answering, your answers really helped and seeing a neurologist sounds like a good idea!
Valerie
Helpful - 0
149081 tn?1242397832
It's a misconception that Narcoleptics fall into a deep sleep immediately. Most movie presentations of Narcolepsy are false such as "Duece Bigalow" or " Rat Race".

The majority of us deal with an extreme urge to sleep and we mostly fight our way through it everyday, and the consequences of fighting it can be painful like you said a headache or muscle aches.

We more often have microsleeps with automatic behavior, which basically means we doze off not knowing it and are able to still perform tasks such as typing or doing dishes.

I would encourage you to google Narcolepsy and search other forum sites for support in addition to Med Help.

I was diagnosed with Narcolepsy last year and had trouble accepting it too (because I don't fit the written profile either) until I found my current Neurologist and wonderful support forums online who have guided me through.

Best Wishes~
Helpful - 0
Avatar universal
Hi again, Valerie. Just want to mention a bit more. I think it is of tremendous value to have my own medical file at home that contains the results of all tests thru the years. Patients have a right to their records. My journey with sleep studies began over 10 years ago, with multiple studies at 3 different labs due to insurance changes over time, different ordering docs, etc. Also, looking at data in black and white enables your research to be more targeted instead of general.

When you get the copy of your sleep study results, first look for the nap study specifics, as in how many did you sleep and how many you reached REM.

Another thing to look at is how many arousals (sleep stage disruptions) you experienced and how many of those were respiratory related. Upper Airway Resistance Syndrome (UARS) is a hot topic these days as its role in disrupting sleep is being more recognized (or respected).

This info from your study is especially important because a diagnosis of narcolepsy is generally reserved for when no other conditions are disrupting sleep architecture. One whose sleep stages are repeatedly disrupted over a long period of time will develop symptoms of sleep deprivation (in quality not quantity) as in excessive daytime sleepiness.

My guess is getting those sleep study reports will be a big help in getting a better understanding of what's going on with you. Take some time to review them and make a list of questions for your doctor. Best wishes.
Helpful - 0
867808 tn?1239482070
I have looked up narcolepsy online and a lot of the symptoms do sound like me, I don't exactly sleep at night, I toss and turn a lot and i wake up but then go back to sleep a couple seconds later. I also have experienced doing things such as reading or doing homework while being sort of half awake and half asleep and it was very strange feeling. I was given some medicine a while ago called Provigil but it did absolutely nothing for me, so the doctor just kept increasing it and increasing it but still nothing happened, except that my heart started racing pretty fast. Then they wanted to put me on Xyrem, which my mom does not want me to take because it is also known as the "date-rape" drug and she thinks that is a little to dangerous to be taking. What medicines or treatments seem to help you?
Helpful - 0
869879 tn?1239660309
Hi Valerie,

I just read through your comments and I am going through the EXACT same thing!!! I'm a little relieved that someone else out there feels the same way as me. I sleep for 8-10 hours a night and still feel like I could sleep for 5 more upon waking. The problem is that I cannot nap. So I go through the day feeling completely exhausted. I do take Lunesta (1 mg) to help me fall asleep at night. I also take Lexapro (10 mg) for the depression.

I take coffee every morning to help fight the fatigue and it does nothing!!! I've had a couple sleep studies done and they were never able to find anything. I did have the narcolepsy test done and I never fell asleep or went into REM sleep. So they ruled out narcolepsy.

Do you have to go through REM sleep to have narcolepsy? I would really like to find a cure. I'm tired of being tired and having these dark circles around my eyes :(

-Amy
Helpful - 0
Avatar universal
i think your like my twin only i also have cataplexy symtoms
i can never stay asleep and i wake up almost every hour at night.
i used sleep about 12-13 hours a day but now i take concerta which is a stimulant used for adhd and i have found that helped a lot to get me through the school day without falling asleep although i still find myself waking up at night.
glad to know im not alone!
Helpful - 0
867808 tn?1239482070
I am glad to know that more people are feeling the same way as me! I just wish that there was an easy answer to this like other medical problems, but this one is a real mystery right now. You mentioned that you never went into REM sleep, and I may be wrong but it sounds to me like sleep deprivation/sleep insomnia. Your body needs REM sleep in order to replenish itself, if you don't get any REM sleep at all, that is probably the main reason why you are so tired and even though you may be sleeping a lot, you are not necessarily having a good sleep. Narcoleptics go into REM sleep very quickly, most people take about 90 minutes to reach REM sleep, but narcoleptics usually take anywhere from 10-25 minutes. REM sleep is also when you dream. You can still be asleep for hours and hours and still be sleep deprived all because REM does not occur. This could be caused by stress (such as that feeling where you have a lot on your mind and can't fall asleep) that is causing you not to get REM sleep or another medical condition. Well I hope this helps you!!
Helpful - 0
867808 tn?1239482070
Thanks for telling me about concerta, next time i see a doctor i will remember to mention it and hopefully that will help me like it helps you!
Helpful - 0
149081 tn?1242397832
My current medications are adderall during the day and xyrem to sleep at night.

I don't blame your mom for being a bit worried about the xyrem, I was too. My doctor tried several medications for sleep and xyrem was the only one that got me into proper sleep stages. Hopefully your doctor will find something that works for you.

Best Wishes~
Helpful - 0
Avatar universal
I have been dealing with the same problems that are being discussed since I was 16 years old. I go to bed, wake up several times a night just for a moment, and have to take naps. I have always said that I need 10 hours of sleep and that a 2 hour nap just makes me mad, I need a 4  hour nap. I recently went through the sleep studies. I was told at first narcolepsy, then insomnia, now that I am just a person who needs lots of sleep because I don't get to REM sleep. In the narcolepsy test, I took all five naps but never reached REM. I am on Ambien at night to help me sleep, and Nuvigil during the day to wake me up. It has been only a couple of days on the meds. I feel horriible, my cognition is fuzzy at best. I was told to give it time.
Helpful - 0
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