Pillow TalkⓇ - Questions and Answers About Sleep

Questions and Answers About Sleep

Hi everyone !!! i just found this site somehow tonite. So, i'm new here =) Anyways...
Soo... I seriously have 3 alarms... i also have another alarm (makes 4) with a vibrating disc to go under your head ...and i have my cell phone which has 3 more alarms ( 7 alarms total) ... Not 1 wakes me up!!! I sleep right thru them! I dont hear them at all! And, i must turn my alarms off in my sleep b/c when i finally wake up (and im late!!) almost all the alarms were turned off! I dont remember turning them off! I even have friends call me some mornings, several times, and i never answer. They've all given up. So, i dunno what to do now?! Anyone else experience this?! Is there anything I can do?! i asked my dr. and she said theres nothing...but then again last time i saw her ..i told her i was having a lot of problems w/my narcolepsy and think i needed my adderall increased (on 10mg 2+ years!) Well, she gave me a script for Chantix ("stop smoking pill") and walked out the room. i was in utter disbelief. I go through everyday exhausted, all day long . im just exhausted...all the time, everyday... so, someone/anyone... help me pls?! =)

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You might verify that you don't have any other sleeping problems to go along with Narcolepsy. It's very common to have more than 1.

I'd switch to a doctor with the American Academy of Sleep Medicine. They get it, which means a lot.

Xyrem may be an option for you. You're suffering from a huge sleep debt and the only way to get better is to pay it off a bit. Xyrem can help pay it off a bit.

Anyway, I have a Soleil alarm clock that mimics dawn. It's the only thing I've found that works. www.soleilsunalarm.com or www.talkaboutsleep.com. I don't make a dime from recommending this, btw. Just wanted to be clear.

Hope this helps a little bit at least.
Thnx Jared. Im already on talkaboutsleep. I actually just made an appt. with a sleep disorder center in philly theyre with the Am.Academy of Sleep Med. They seem great too, im keepin my fingers crossed!
what other sleeping problems do u think i may have?
thnx for responding!
have a great wknd
Restless Leg Syndrome, Sleep Apnea, or some other sleep disturbance. It's hard to say exactly with so little information available. Something is preventing you from getting the kind of rest you need. Maybe after a sleep study it'll become more clear. Sure hope so for your sake.
I had a sleep study done... i dont have sleep apnea, no breathing issues.no snoring. good oxygen. little movement. Sleep study detected narcolepsy and extreme daytime sleepiness. I asked my doctor about my problem about waking up if there was anything to do about it, maybe read the sleep study & figure out when I'm in rem and my cycles to determine the amount of time I should be sleeping, or when to sleep and wake to make it easier. ... she said there was nothing. I just found a new doctor in philly, looks like they got some treatments for this (i havent heard of yet either) so i hope they can help me!!! im keeping my fingers crossed. The appt. isnt till September 17th tho. isnt too far away but im running out of meds. too! Thanks for your responses Jared !!!
Hey Kelly,

I am very interested in how your latest appointment went. I have the same problem as you. It really sucks!! I can't wake up to anything!

Well let me know! Thanks!
Hi Kelly, My experience is that the narcolepsy can disrupt sleep enough (disrupted in the sense that although we people with narcolepsy (PWN) sleep, the lack of the hormone hypocretin in our brains renders us unable to experience restorative deep sleep) that there was no way that I could wake up either. I also turned off my alarms in my sleep with no memory of it later (which is called automatic behavior). A combination of a Sonic Boom clock with a bed shaker under my mattress along with waking up to take Provigil 1 hour before I had to get out of bed finally did it for me. Of course, that presupposes you've got someone around to insist that you wake up enough to take the Provigil or another stimulant if you don't wake up on your own.

The real solution for most people is going on Xyrem. Not every PWN can take it, and for some people (like me) surviving the first few weeks' side effects is a whole story of its own. But, boy, is it worth it. Xyrem is the one and only drug on the market that allows PWN to have restorative sleep. Other than known problems with a PWN's insurance coverage that make prescription of Xyrem too costly for the PWN, I don't know why people with narcolepsy aren't prescribed Xyrem FIRST, before all of these stimulants. Why stimulate our exhausted brains to stay awake despite exhaustion, if the doc's can help us get the sleep that we need in the first place? Maybe there's some clinical reason out there, but I sure haven't heard what it is yet!

Good luck!

Saraiah
The dr. wanted me to take xyrem but i wasnt too keen on the idea. she said i needed to wake up 4hrs after i went to bed to take a 2nd dose... well, i cant wake up and i have no one around to help me, so i couldnt take that. She gave me nuvigil & lexapro. Nuvigil to take 1hr before i had to actually wake up...if possible. lexapro whenever. the antidepressant is suppose to help w/sleep..somehow. she also gave me 10mg ritalin if i needed it like at the end of the day (i guess as a backup if im still sleepy after taking nuvigil) NO answers yet on how to wake up or what it is or why...guess ima have to keep doin my own research in the waking up depart. haha. ill keep ya posted on how these work out. thnxx for your responses guys:) have a great day !!!
soo idk if i updated about new meds/ wakin up.... recommendation # 1... do not take nuvigil & levxapro together. omg i thought i was dying. took them both 1 day and that was it, never again. super nauseous, hot, clammy, sweaty, felt like crap, felt weird, my whole body was shaky,. my head hurt. it wasnt good at all. lol. so now i just take nuvigil 250mg. in the am. which has been helpin me a lil better. much better than before tho. i now have my ritalin which i took 2 days so far in the afternoon to help get me thru the end of the day. i still have my coffee and red bull everyday tho. ive had days were im still exhausted... i still have been gettin extremely sleepy after eatin... and theres still days i cant wake up. i must say tho, im wakin up a lil easier./better now, so far..ive only not been able to wake up maybe 2-3 days and its been 2 wks... but, i did have help for 10 of those days. ..so 2-3 outta 4 days alone isnt too too bad for mee :) lol anythin else helpin/workin for you guys w wakin up yet???
I had that problem of not waking up to anything, unless someone woke me up. I planted alarms around the room and on the bed. I missed out a lot of life. Short story here. Things were getting even worse than that as I got older. I didn't know what was happening, was just exhausted. I could never remember a movie I had watched 20 times. I was diagnosed finally a year and a half ago. I know it started in my early teens. People generally seemed to think I was high or on something. I am in my 30's now. I can drive now and have more times where I feel like Im alert, but still get some really sleepy times and some general cataplexy.
The waking up in the middle of the night after 4 hrs I thought there was no way in hell I was going to take xyrem! However my cataplexy got really bad. I couldn't make a stressful call myself, no driving or making meals. I moved in with friends that took care of me. Okay that was going to be the end of my life. No Fn way, so I called the Dr. call in the medicine and overnighted it. There is a patient assistance program. http://www.jazzpharma.com/support.php. NORD(National Organization of Rare Diseases also helped with the assistance. It gets easier to take the second dose because you can actually wake up to that alarm and take the medicine. You can wake up in the morning to your not so loud alarm. I have one alarm now , my cell alarm on med low. I understood and followed a movie plot for the first time after about this year or so of taking xyrem. I can laugh out loud and not fall over.hope this helps? =)
Here is a cool one. It rings and then runs around the rooms so you actually have to get up and chase it. http://www.alarmclocksonline.com/Clocky.htm

Here's a list of really annoying alarms that might work for you because they are either extra super load or they require some difficult action by you to shut them off. http://www.uberreview.com/2006/03/top-ten-most-annoying-alarm-clock...

Hope that helps.
OMG i have never seen the one that hangs over your head yet!!! LOLOLOL!!!! that's great lol
my friend stayed over & kept yellin for mee to sit up which, he said, i eventually did...but right as he went to shut the door i fell over & was asleep.
so, didnt wake up to all my alarms when i had to... missed my staff meeting! sucked..I said to him, next time, pick mee & throw mee in the bathroom or just throw mee in the tub turn the water on! that may wake mee!! haha. I did buy an air horn & told whichever friend had "wake up duty" to blow the horn in the mornin, see if it'll wake mee, & NOT ONE person had used/tried it!!!! so i dunno if an air horn is loud enough yet?!?! lololol.
I'm about to buy all those alarms & set all them on top of what I have now!! hahaha, my room will look like an electronic / kb toy store in the AM!! lol hopefully, somethin will get mee up...
if not, im gunna have to start creating & buildin my own "wake up machine"... lol....
somethin that'll blow the air horn, throw water on mee, smack mee in the face, have an extra loud alarm x's 10... and other things... dunno what else, yet.

* *THANK YOUU, Lauren for your comment, postin sites, & info !!!!* *

* *NarCat- idk if i said thnxx, but,Thank Youu too for the info.on Xyrem!!!((Saraih Naps, too!!!))* *

* *Jared- thnxx for your comments, alarm clock site, & input too!!! i actually found in a "cheapiie magazine" that kind of alarm w/ the diff. light & colors... it's worth a shot! they all are! lol.* *
Have you figured anything out with not waking up in the mornings? I have been doing some research on not getting up in the mornings and have seen your post all over google so I was just curious. I can't wake up in the mornings, my boyfriend says it's almost as if I'm sleep walking. He says I get up shut my alarms (yes like so many I have several of them) off and sit down and will carry on a conversation with him and he wont realize I'm dead alseep until at some point he will ask me a question and I will respond to him with some off the wall question then he realizes then I'm still alsleep. If I get woke up to the buzzing of an alarm clock I will wake up in a horrid mood screaming yelling throwing things sometimes I do this for 10 to 15 minutes before I even realize I'm doing it then at that point I'm so imbarresed by my actions I have to play it off like I knew what I was doing the whole time. I'm always tired during the day and I seriously lack motivation all together. I havent been to the Dr for any of this because they will want to send me to do a sleep study, I see no point because the first 3 or 4 nights I stay in a new place I'm late to bed early to rise with no problems at all. So I'm just looking to get ideas from anybody.

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