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Do I Have Narcolepsy, Or Am I Just Tired?


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#1 jwsavs

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Posted 07 June 2010 - 12:30 AM

this is long, especially for an annoying newcomer's first post, so sorry!

i've been facing really bad sleepiness for about three weeks. i've always been tired, but lately i just have these really bad bouts of sleepiness.

i've realized that i get horribly tired during random parts of the day for about 15 to 30 minutes each time. some times, i cant help but fall asleep, and other times, i can give my best effort to fight it off. i've never really felt the need to take naps, the only time i take them is when i'm bored and have nothing to do. but these aren't naps because i'm exhausted or tired, but because i'm so drowsy i can barely keep my eyes open. also for example, one weekend, after a great night's sleep, i woke up at about 9AM and by 11AM i couldn't even stay awake at all, i was falling asleep every half hour then waking up and not able to keep my eyes open and kept repeating this process till about 4pm. also, twice now i've sat on my kitchen floor to pet my dog and fallen asleep in the process for 30 minutes one time and 2 hours the other... didn't even notice i had laid down.


something that could possibly attribute is that i take 10mg adderall for ADD. i started taking it three weeks ago. my mom thinks that my tiredness is just me "crashing" from my medicine, but i am just as equally tired the days i take it as i am the days i don't. i definitely don't take it every day, because it doesn't even do anything for me except make my heart beat in my throat. anyway, i also have started to think my tiredness follows a pattern. when i take my adderall, i get it at about 12, 4, and 7. when i don't take it, i get it around 10/11, 3, 6, and 9.
also just for a reference i've been writing it down the last few days
wednesday- no adderall, woke up at 7. mild drowsiness at 10, fell asleep from 4 to 6, and 7 to 9.
thursday- no adderall, woke up at 7. extreme drowsiness at 11, fell asleep from 4 to 9:30.
friday- adderall, woke up at 8. extreme drowsiness at 3, fell asleep from 5 to 8.
saturday- adderall, woke up at 12. mild drowsiness at 4, fell asleep from 8 to 10.
sunday- adderall, woke up at 11, extreme drowsiness at 3 and 5, fell asleep from 7 to 8:30.
monday, adderall, woke up at 7, unbearable drowsiness at 2 (had to leave school to risk not falling asleep during a test and immediately dozed off the second my mom picked me up in the car), fell asleep from 3 to 4 and 5 to 7.

i also experience sleep paralysis when going to bed at least 3 times a week i'd say, and in the morning maybe 2 times a week. i've hallucinated with paralysis a few times before in the morning, thinking there were crowds of people in my room but i couldn't move to see the people so i was stuck in my bed pretty much in a panic. i also dream right when i fall asleep, if that means anything. i don't have any cataplexy.

oh, also, i'm fifteen years old if that bit of information helps at all.

thank you in advance!

#2 jwsavs

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Posted 10 June 2010 - 10:48 PM

no replies i see. well, i've been feeling more and more drowsy the last few days. tuesday and wednesday, i woke up at 8 and was already unable to keep my eyes open by 1130. i slept from 12 to 5 both days. only an hour of sleep today. i now have an unbearable headache the last two days which won't go away even with excedrin and aleve, increased loss of alertness where i've just been zoning out, and lack of motivation. for the last three months i have been running every day and now i just can't. i'll tell myself i need and want to go running, but i can't make myself. i'm just too tired all the time to do anything. i don't want to hang out with friends. i don't want to do my school work. i don't even want to watch television or use the computer. i just want to sleep.

i honestly am starting to feel like a zombie. today i was in the drugstore just wandering around, not even really thinking about what i was doing, and just wanting to go home and sleep forever. people will talk to me and it's like i can't even hear them. i'll be standing in line and just blank out completely. i just feel foggy all the time.

help..



oh, also, back in january i had a bunch of bloodwork done, and i got tested for hypothyroidism and a couple other things i can't remember. i don't really remember how i was feeling then, it seems like a really long time ago. and my parents can't remember why they had me go to get all that done anyway. i think its because i was just sleepy and my feet and hands were always freezing. but everything came up clear. i was just reading some articles about hypothyroidism and narcolepsy, so if this is related, just throwing it out there.

#3 Lisa Kato

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Posted 11 June 2010 - 12:14 PM

no replies i see. well, i've been feeling more and more drowsy the last few days. tuesday and wednesday, i woke up at 8 and was already unable to keep my eyes open by 1130. i slept from 12 to 5 both days. only an hour of sleep today. i now have an unbearable headache the last two days which won't go away even with excedrin and aleve, increased loss of alertness where i've just been zoning out, and lack of motivation. for the last three months i have been running every day and now i just can't. i'll tell myself i need and want to go running, but i can't make myself. i'm just too tired all the time to do anything. i don't want to hang out with friends. i don't want to do my school work. i don't even want to watch television or use the computer. i just want to sleep.

i honestly am starting to feel like a zombie. today i was in the drugstore just wandering around, not even really thinking about what i was doing, and just wanting to go home and sleep forever. people will talk to me and it's like i can't even hear them. i'll be standing in line and just blank out completely. i just feel foggy all the time.

help..



oh, also, back in january i had a bunch of bloodwork done, and i got tested for hypothyroidism and a couple other things i can't remember. i don't really remember how i was feeling then, it seems like a really long time ago. and my parents can't remember why they had me go to get all that done anyway. i think its because i was just sleepy and my feet and hands were always freezing. but everything came up clear. i was just reading some articles about hypothyroidism and narcolepsy, so if this is related, just throwing it out there.



Sleepyheads are slow to reply. ;o) I have had symptoms since I was 7. (Started with Sleep Paralysis) I am 40 now and just diagnosed. TWith the Excessive day-time sleepiness and frequent sleep paralysis I would definately get a sleep study and see a sleep specialist or a neurologist. Did you have these symptoms before you started Adderall? Maybe start by talking with the provider who perscribed the Adderall to you? Definately seems like the Adderall is not doing what is supposed to. I am on day 3 of trying med #4 for the Narcolepsy (Thats not counting all the meds I tried when I thought I was dealing with Depression/Anxiety/OCD) Words and thoughts are slow coming right now. Keep posting.

#4 jwsavs

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Posted 11 June 2010 - 06:45 PM

Sleepyheads are slow to reply. ;o) I have had symptoms since I was 7. (Started with Sleep Paralysis) I am 40 now and just diagnosed. TWith the Excessive day-time sleepiness and frequent sleep paralysis I would definately get a sleep study and see a sleep specialist or a neurologist. Did you have these symptoms before you started Adderall? Maybe start by talking with the provider who perscribed the Adderall to you? Definately seems like the Adderall is not doing what is supposed to. I am on day 3 of trying med #4 for the Narcolepsy (Thats not counting all the meds I tried when I thought I was dealing with Depression/Anxiety/OCD) Words and thoughts are slow coming right now. Keep posting.



yeah, the boards are a little slow, haha.
i have to go back to my doctor in a week or so for an adderall refill, so i'm definitely going to talk about it with him then. but the thing is that i went off it for a week and my symptoms still kept getting progressively worse. thanks for the answer though, hope your medication works out for you.

#5 Lisa Kato

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Posted 11 June 2010 - 11:54 PM

yeah, the boards are a little slow, haha.
i have to go back to my doctor in a week or so for an adderall refill, so i'm definitely going to talk about it with him then. but the thing is that i went off it for a week and my symptoms still kept getting progressively worse. thanks for the answer though, hope your medication works out for you.


I switched from Ritalin to Dexadrine this week. Seems to be much better. No need to nap during the day however I am sleeping much lighter at night and having a bit of trouble falling asleep. Much better tho.

#6 vidar

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Posted 12 June 2010 - 01:39 AM

I'll try to get you a more specific reply in the future if I am able to due to school demands. There has been some literature linking true idiopathic hypersomnia to Raynaud's phenomena. Conversely if your cold hands happened well you are on adderall, that can do it as well as a side effect of the medications. This is also a common side effect of OCP in women with heavy caffeine users or smokers (idk your med history). As for the cardiovascular side effects you get I'd mention them with your doctor as he could perhaps tease out if it is anxiety from the medication or if it is a CVS side effect. best. Matt

#7 butterflygirl

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Posted 15 June 2010 - 01:52 PM

Get to a Dr and dont stop til someone fixes you! No one would listen to me for 20 years, I just got diagnosed. Have them check you for MONONEUCLEOSIS too. I had that in high school but turns out I had N in HS too! haha Good luck and let us know!

#8 jwsavs

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Posted 16 June 2010 - 01:24 PM

I'll try to get you a more specific reply in the future if I am able to due to school demands. There has been some literature linking true idiopathic hypersomnia to Raynaud's phenomena. Conversely if your cold hands happened well you are on adderall, that can do it as well as a side effect of the medications. This is also a common side effect of OCP in women with heavy caffeine users or smokers (idk your med history). As for the cardiovascular side effects you get I'd mention them with your doctor as he could perhaps tease out if it is anxiety from the medication or if it is a CVS side effect. best. Matt



this post completely jogged my memory, back in january my doc diagnosed me with raynaud's. he wanted to put me on blood pressure meds but he thought i was too young for it, so thank you for mentioning that because i completely forgot!

the cold hands havent been a side effect of adderall, because i only started the adderall in may and the cold hands only happened in dec/jan/feb/march when it was cold. they were changing colors pretty frequently, which is the only reason why i was concerned. and also i don't know what OCP is, but i don't smoke and my only caffeine intake is a coke classic once every couple days, ha.



Get to a Dr and dont stop til someone fixes you! No one would listen to me for 20 years, I just got diagnosed. Have them check you for MONONEUCLEOSIS too. I had that in high school but turns out I had N in HS too! haha Good luck and let us know!



thanks for answering. well, my friends and family keep telling me i probably have mono but the tiredness fluctuates, so i would doubt it's mono because it's not constant. and also, there's really not a chance i could even have it, because no one around me has had mono in the last year. and i don't have a fever or sore throat or swollen glands or anything, but i guess it could happen.


i'll definitely just mention all of this to my doc on the 24th (so far away it seems!) and check back and let you all know what he says :)




also just for a general update i've been sleeping a lot later since i'm done with school, waking up anywhere between 12 and 4 in the afternoon. no one can get me up earlier. i have three alarms i sleep through, 6 AM (i try to run before the sun rises but my alarm always fails me), 9 AM and 11 AM. i've had family and friends literally shake me to get me up but unless it's past noon, i just can't wake myself up. if i do, i keep dosing off and i'm groggy all day. like, i woke up at 10 AM on monday because i went to bed around 10 PM, but i just couldn't keep my eyes open. i ended up falling asleep watching television till about 2 PM. i'm also completely alone in my house from 7 am to 3 pm, so there's no noise in the house to wake me up because it's completely silent and there's no "physical alarm" like my parents to actually get me up. so, i just sleep for as long as my body feels necessary, i guess. i think waking up later helps with my tiredness during the day, because i only get extremely drowsy around 5 PM or 6 PM, but then i can't sleep at night till around 2 or 3 which is probably why i can't get up in the morning. anyways, just an update.

#9 jwsavs

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Posted 03 July 2010 - 01:35 PM

just for an update, i finally got into my doctor on thursday after weeks and weeks of waiting and three reschedules.

i told him that the adderall wasn't helping at all, and that i was excessively tired all day and i have a really hard time waking up in the morning, even when i don't take the Adderall. i told him that when i do take it, i'm still horribly tired but my heartbeat is upped and i just feel really nauseous. he wanted to test me for anemia and my thyroid but i told him he'd already tested me for those a couple months ago, and then he checked my records and yeah, all my testing came up negative.

he was in a rush, since he was already an hour late for my appointment, so he just wrote me a script for 30mg dose of Vyvanse a day that should make me less tired and left. he told me to come back soon if i feel like it isn't working, and day one on it, today, i feel like crap. my heart feels like it weighs a hundred pounds in my chest and i'm still really tired.

now i just feel like my ADHD was definitely a misdiagnosis, and he isn't realizing this. he's now treating me for my tiredness without looking for a reason as to why i'm so tired. i don't even think he knows what he's really treating me for, because he's putting me on Vyvanse to keep me awake during the day when he originally put me on the Adderall to help me concentrate at school.

i'm going to try to get a referral to a sleep specialist, because my doctor works at a certain hospital and they run a sleep clinic. so on tuesday i'm going to try to call my doc's office for the referral then make an appointment for an initial consult. :unsure:

also two days ago, when i was nervous i got really really weak in my left knee and i could barely move it. also last week i was anxious when walking to my mailbox (report cards :rolleyes:) and my left leg felt really weak, and i had to stop walking. i don't really know if this is cataplexy or not, but it kind of freaked me out a little.

#10 Saraiah

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Posted 03 July 2010 - 04:42 PM

I think you've got exactly the right idea: Get yourself to a sleep specialist as soon as possible. If your doc balks at giving you the necessary referral, then go get yourself a more enlightened doctor. You are at the age at which most people with narcolepsy have a sudden onset of symptoms. You're describing experiencing symptoms that fit the criteria for emotion-triggered cataplexy, which is a diagnostic symptom for narcolepsy. You've also got Raynaud's, which is another autoimmune disorder, and that shows that you are a person with some vulnerability to autoimmune disorders like narcolepsy. It sounds like your present doc is just wasting your time in prescribing treatments that aren't working, and if you're in the U.S., high school will be back in session in about 2 months. If you can get scheduled for a sleep study (make sure to ask to be scheduled for both a polysomnogram AND a Mean Sleep Latency Test) prior to the beginning of the school year, you might be able to get helpful treatment and be awake for your classes in September.

Keep asking good questions, and advocating for yourself - which, by the way, is very impressive in a 15-year old person. Good luck!

Saraiah

#11 jwsavs

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Posted 13 July 2010 - 11:59 AM

i read your private message a while ago and i always forget to get back on here, so i just want to say thank you for that, and i may take up your offer in the future. :)

i haven't gotten the recommendation yet because my mother wants me to try out the Vyvanse prescription for a while since it's supposed to treat narcolepsy anyway, even though i've only taken it three times including today and i still feel like crap. she just wants me to wait till august 1st (my refill appointment) and talk to him about getting the recommendation then and figuring out why i'm feeling like this instead of just putting me on another medication.

but she also said if i really hate the Vyvanse (which i really do, it makes me feel nauseous and still tired and horrible) she'll try to get me in sooner. so no progress on getting diagnosed yet but hopefully by next week i can come back here with some news. <_<

#12 venetia

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Posted 14 July 2010 - 03:36 PM

I went through countless doctors (internal medicine, neurologists, psychiatrists--even cardiologists and an orthopedic physician for some reason) before finally being referred to a sleep specialist. My onset of symptoms happened when I was about 14, it's pretty common in adolescence.

N seems to be pretty widely misunderstood, even in the medical community. My neurologist just kept telling me I was "stressed out" (I'm the most mellow person I know!). Then, finally, after my MSLT, he admitted he was wrong. Even then he said it was hypersomnia--which is an outdated term. Finally I got the referral I needed.

You can't blame them much, though. Brain disorders vary so widely between people, and there are so many conflicting studies out there, and so many drugs that have a huge spectrum of possible side effects, that it's got to be pretty difficult to come to a conclusion. Sleep studies are very expensive, too, which is probably why they are "last resort" kinds of diagnosis-finding trials.

There are lots of doctors out there capable of giving you a second opinion, and you shouldn't hesitate to seek it. Whatever the problem is, try to nip it in the bud ASAP. Living for years and years and years with a problem like the inability to stay awake is nasty. The world operates on a 9-5 schedule for the most part unfortunately, and for sleep disorder sufferers, it's a constant struggle to adapt.


You're on the right track to figuring all this out though, so hang in there!