35 replies to this topic

[m.clausen]

Hello, i was diagnosed w/ narcolepsy w/o cataplexy at the beginning of february, and ive probably had it since i was in high school. I started on Nuvigil about 2 weeks ago and it has helped a lot in keeping me awake during the day. But, the biggest problem that i have is actually waking up. Ive got 5 different alarm clocks, they start going off an hour before i wake up, and they go off at 5 minute intervals. I even have the 'sonic bomb' which helps...but not as well as i had expected.

im just curious to know what everyone else does to make it a bit easier to wake up in the a.m.

thanks in advace

[LuciasMarco]

m.clausen, This is a great topic! What a source of frustration. I doubt my methods would help anybody but I feel as if I've tried it all. One really annoying alarm from my cellphone on the floor 5ft. from the foot of my bed. If I don't wake to this, I won't. I do have two other alarms on the cell and my backup clock next to my head. It seems if I hit the snooze I seriously get lost in my dreams. I think I could do that pattern for hours! Does that happen to you? If you press snooze and lay back down do you jump right back into your dream where you left off? Just curious, now that you've met other people like yourself, are you seeing more symptoms in yourself that you might have thought everybody lived with?

[m.clausen]

m.clausen, This is a great topic! What a source of frustration. I doubt my methods would help anybody but I feel as if I've tried it all. One really annoying alarm from my cellphone on the floor 5ft. from the foot of my bed. If I don't wake to this, I won't. I do have two other alarms on the cell and my backup clock next to my head. It seems if I hit the snooze I seriously get lost in my dreams. I think I could do that pattern for hours! Does that happen to you? If you press snooze and lay back down do you jump right back into your dream where you left off? Just curious, now that you've met other people like yourself, are you seeing more symptoms in yourself that you might have thought everybody lived with?

In the past, ive gone as far as throwing my alarm across the room and gone back to sleep .

and as far as noticing more 'symptoms' id have to say yes...im the only person ive ever known who could fall asleep during 5 different hurricanes (georges, katrina, rita, gustav, & ike) as well as a few tornadoes (just a few blocks from my house), and fire alarms (they were just testing the system). Also....i used to think everyone was always as tired as i was, but i was the only one who sucked at dealing w/ it...lol.

but, on the bright side: seeing how much REM sleep i get really gives me the opportunity to work on my lucid dreaming

[dreamiestgirlever]

after years + years + years of failing and torturing myself, i now simply skip mornings all together. all that know me know that if you need me before 12noon you will have to come over + physically wake me up. this is no joke. i've accepted it + those in my life have as well. (even my recent employer if you can believe that.) it is such a relief to me to have this understanding. my strength is in the middle of the night. i can be counted on then. then i can give you a ride to the airport or pick you up. but mornings, call someone else or you will be left stranded.

xyrem does help me to plan to wake up at a certain time because when it wears off it has a wake-up effect. this is so amazing+ wonderful to me. but still, mornings just hate me + i hate them. thus we avoid each other all together.

[LuciasMarco]

In the past, ive gone as far as throwing my alarm across the room and gone back to sleep .

and as far as noticing more 'symptoms' id have to say yes...im the only person ive ever known who could fall asleep during 5 different hurricanes (georges, katrina, rita, gustav, & ike) as well as a few tornadoes (just a few blocks from my house), and fire alarms (they were just testing the system). Also....i used to think everyone was always as tired as i was, but i was the only one who sucked at dealing w/ it...lol.

but, on the bright side: seeing how much REM sleep i get really gives me the opportunity to work on my lucid dreaming

M.Clausen, That is seriously funny! I can imagine watching a storm come in and trying to decide if there's enough time for a nap. I can relate to your dreaming. It's one of my biggest symptoms. Heavy, heavy dreams and nightmares. During the day too.
We all share many symptoms and secondary conditions that the Docs aren't talking about. I think this is one of the best places to learn about this strange disease!

[m.clausen]

after years + years + years of failing and torturing myself, i now simply skip mornings all together. all that know me know that if you need me before 12noon you will have to come over + physically wake me up. this is no joke. i've accepted it + those in my life have as well. (even my recent employer if you can believe that.) it is such a relief to me to have this understanding. my strength is in the middle of the night. i can be counted on then. then i can give you a ride to the airport or pick you up. but mornings, call someone else or you will be left stranded.

xyrem does help me to plan to wake up at a certain time because when it wears off it has a wake-up effect. this is so amazing+ wonderful to me. but still, mornings just hate me + i hate them. thus we avoid each other all together.

i used to LOVE my mornings and im rarely able to wake up for them now :'(. Although, i find that if i take a nap later on in the afternoon till about 10pm or so...Im able to stay awake long enough to see the sunrise and such....but i cant do that too often cause i burn out a lot earlier than usual (right around this time).

my doc was thinking about putting me on xyrem to help w/ that though....but to be honest, xyrem scares me a little bit; then again it would be fantastic to actually be able to get some REAL sleep and be able to wake up in the morning

[Tracer]

I'm really bad about hitting the snooze also. What helps me is when I wake up a couple of hours for I'm suppose to I take my Nuvigil and that helps me. It gets into my system by then and it's a little easier to get up and going.
Good luck

[mswanndeford]

Hello, i was diagnosed w/ narcolepsy w/o cataplexy at the beginning of february, and ive probably had it since i was in high school. I started on Nuvigil about 2 weeks ago and it has helped a lot in keeping me awake during the day. But, the biggest problem that i have is actually waking up. Ive got 5 different alarm clocks, they start going off an hour before i wake up, and they go off at 5 minute intervals. I even have the 'sonic bomb' which helps...but not as well as i had expected.

im just curious to know what everyone else does to make it a bit easier to wake up in the a.m.

thanks in advace

m.clausen, excellent question! I used to struggle so much, still do actually, but not quite as much since starting Xyrem. What helps me is that my husband gets up earlier than me and brings me coffee in bed . I never thought about taking my Nuvigil while still in bed. I am going to add that to my routine.

Good luck!

[m.clausen]

m.clausen, excellent question! I used to struggle so much, still do actually, but not quite as much since starting Xyrem. What helps me is that my husband gets up earlier than me and brings me coffee in bed . I never thought about taking my Nuvigil while still in bed. I am going to add that to my routine.

Good luck!

i live alone :'(. But i have been reading up a lot on xyrem, and the more i read the more i want to talk to my doc about trying it out, but some of the side effects really scare the hell out of me

[Supportingmyhusband]

Again I am relieved to find that my husband isn't the only one who struggles here!!

Usually his alarm will go off for several minutes before I'll give him a shove and wake him up. After he turns off the alarm, occassionally he'll roll over and try to go back to sleep. I let him, but if he's not up within 10 minutes, I give him another shove and usually say something like "hey you gotta get goin'."

I'm not neccesarrily a light sleeper, but having three kids under the age of 4, I've learned to wake at the smallest, slightest noise! So I guess I am his best alarm clock. He claims that once he gets his pill and a cup of coffee, he's good to go.

Another helpful hint from his doctor was to make sure he maintains the same schedule every day. Since he is in the Army, he has to be at PT formation at 6 every morning. As a result, he wakes up at 5 during the week, but now, also on weekends. It's not exactly a bad thing- he claims the house is quiet and he can spend some time playing video games, reading a book, catching up on a few things, etc. He gets a little personal time before we all start moving! He also makes a point of going to bed between 9 and 10 at night, to ensure 7-8 hours of sleep (makes his meds work better!!). Some nights we push that envelope when we have company, but it's to the point where most of our company knows and understands. Not to mention his body starts to shut down and he's pretty much useless after 9 anyways, so the company usually heads out!

[incoherentswirl]

i live alone :'(. But i have been reading up a lot on xyrem, and the more i read the more i want to talk to my doc about trying it out, but some of the side effects really scare the hell out of me

If you do try Xyrem and have any unusual side effects, besides talking with your doctor and the Xyrem nurses, you might consider asking someone to stay with you a few nights, or see if a neighbor's willing to help if you need it in the middle of the night. Driving yourself to the ER is gonna be out of the question until the Xyrem's fully metabolized.

I knew I was having a reaction to the Xyrem within a week of starting it, but I'm allergic/sensitive to almost everything, and yet sometimes am able to build up a certain tolerance to things given time...I lucked out and didn't have to dial 911 the night the Xyrem induced "catch in my throat feeling" turned into "gasping like a fish out of water", but it was close. If I had a roommate, I'd probably have tried the Xyrem a bit longer and tinkered with lower doses and different types/amounts of antihistamines to see if it could be managed like the rest of my allergies and asthma, but without someone else around to make a phone call or drive me to the hospital if needed...

As for the "how do you wake up" - I wake up to take my stimulating AM meds (Nuvigil, Cymbalta, pseudaphed if needed) and then go back to sleep for an hour or so, and it helps a little. Better yet was when I was able to include an energy shot containing 250 mg of caffeine with the pills, but the caffeine's been too hard on my stomach. If someone has the magic cure to mornings for those of us that can't avoid them all together...

[Jigglypuff]

Hi .. I find that I wake fine in a morning. My alarm goes off 7 am and whoosh.. Im up and raring to go. This lasts until about 11 am then the fun starts.. wave after wave of sleep attacks / hallucinations at my desk and in meetings ... but usually waking up is fine. Maybe its because i usually half wake up when my husband gets up around 6 ish and this gives me some kind of psychological "warning" that getting up time is imminent. Funnily at weekends, when i dont have to wake up early and theres no alarm I sleep in quite late. at the moment I am not on any medication . still going through diagnosis but its pretty obvious that with extreme sleepiness / cataplexy / hallucinations etc then that is what my problem is.

[Lovely Raven]

I also have trouble waking up in the mornings regardless of how many alarm clocks I have set. I find that when they go off, my body automatically responds by reaching out and hitting snooze and I don't even realize it half the time. Taking my medication in the morning does help wake me up, but the problem is getting up long enough to take it! I have two alarms set on my cell phone to go off every morning, with the snooze lasting 5 min at a time. It usually takes a few hours before I can get out of bed. I have found that even having an alarm across the room doesn't help because by the time I hear it, it has been going off for some time. I feel like a zombie, I am so out of it. I just crawl back into bed. It can be so frustrating when my mind knows I need to get up, but my body is so exhausted that I can hardly will myself out of bed.

I just take it day by day, some days are easier than others.

[mr vibrolux]

Hello,

I was diagnosed 10 years ago,and I have come to the conclusion that I will never wake feeling rested again, so I just hunker down and bull my way through the morning wake up. You will find your amount of sleep that will give you the max benifet, more isn't allways better.7-8 hrs is my best. I keep a very strict sleep schedule year round based on my work day........yeah,.... I don't get weekends off. I don't stray more than an hour later in the a.m. on the weekend than I do on the week days. My "comfort sleep in" is after the alarm goes off I hit snooze, then when the alarm goes off the second time I stumble out of bed to the coffee pot. I know it is lame, but that one minute of snuggling back in and giving in to sleep gives me more than actually sleeping in does. I used to take my first day of vacation and sleep in, and then use the next three days getting back on schedule, but I only have one week a year and I don't like wasting 3-4 days of it feeling even more sluggish just for 4or5 hours of sleeping in on day one. I need two hrs in the am to get the lead out, so I get up pretty early. The good side to being up so early, is I can get alot of little mindless things out of the way while people are still sleeping, make my lunch,check e-mail, water the flowers, go to the dump, feed the birds, watch the river go by calm and silent with no boat traffic. The way I see it mornings are allways going to be hard, you might as well get the hard part over with so you can get on living your day to the fullest. I was not a morning person when I was younger, and even now I would much rather be up at night, but I have transformed my life to get the most out of my days, because short of winning the lottery I need to be my best during work hours.

[Rodrigo Baires]

Well, i dont really know if this is the information required, but it coul be usefull por someones.
In my case, i never leave my clock alarm beside the bed or next to me, because like that, as an
automatic reactionI turn it off and later when i wake up, i dont remember anything.
Thats why the clock alarm must be in a place, set up with the highest volume, that makes me
stand up.

My 200 mg. Modanifinil is next to the my clock, and i take it inmediatly. It is important to do it
before taking breakfast or any drink. Doing this, the Modafinil will act directly to the the
stomach walls. It helps me to react and leave almost totally that kind of deep sleeping
state when i wake up that doesnt allow me to think clearly and makes me moving without
coordination. Then, i begin walking for some minutes.

I go the bathroom and wash my face with warm water. Then, i come back to my bed
and make it, not giving me the oportunity to come back to her. I put over my bed the
cloth i am going to dress, not giving to me (as a second step jaja) the oportunity to
come back to bed.

Then, i go directly to have a shower with warm(hot water, speciallly over my head.

Its important not coming back to bed nor sitting down, because doing this Modafinil
effect dissapears.

Well, all this, helps me a lot. Sometimes its not enough and i dont succeed, but again,
it helps me a lot...

[Stacey]

I am so happy I saw this post.... I was about to ask the same question. I was diagnosed with N just about a month ago but have had symptoms for about 8 months now. One thing I noticed is how my mornings have changed.... I used to be the type to wake up before my alarm and just wait in bed for it to go off... I was always at least 30 minutes early for work everyday and vary rarely did I sleep in even if I was up late the night before. Over the last 8 months I have had a harder and harder time waking up. I have my cell phone that has 3 alarms that go off a differnt times in the morning, I have an alarm across the room, and I use my boyfriend's cell phone alarm on the other side of the bed. Somehow I never hear any of them. I do somehow wake up around the same time every weekday morning though after all the alarms have been going off for over an hour. Once I wake up I am good to go no problem getting moving but then again the fact that I am late kinda gets my adrenanlin going. Now weekends is a different story I sleep in until 9-10am daily, my kids know that I don't wake up and have learned how to make their own breakfast and to make sure my youngest, he is only 2, is fed as well. If they need me they come wake me and I am up with no problem.

I go see my sleep doctor next week to see how I am doing on my meds... I am only on Ritalin 10mg in the am and about 5 hours later I take 10mg more then another 5 hours after that I take another 5mg. He doesn't want me taking anything after 6pm and wants my dosage as low as possible. I feel like my dosage needs increased ar my med changed. When I first started taking it I was up wide awake and felt normal again but now I'm starting to drag again. I know my doctor wants me on Provigil but I can't afford it even with my insurance my co-payment would be $70 a month and being a mom of 3 money is very tight and its just not dueable. I do like what I have seen about the Xyrem for the mornings but the other side effects scare the crap outta me....

[LynnH]

m.clausen, This is a great topic! What a source of frustration. I doubt my methods would help anybody but I feel as if I've tried it all. One really annoying alarm from my cellphone on the floor 5ft. from the foot of my bed. If I don't wake to this, I won't. I do have two other alarms on the cell and my backup clock next to my head. It seems if I hit the snooze I seriously get lost in my dreams. I think I could do that pattern for hours! Does that happen to you? If you press snooze and lay back down do you jump right back into your dream where you left off? Just curious, now that you've met other people like yourself, are you seeing more symptoms in yourself that you might have thought everybody lived with?

I was just diagnosed last week, and thinking about this very question this morning as I struggled not to hit the snooze button again, it got me wondering about my own difficulty getting up in the morning. LuciasMarco, I used to get up on my own at, like, 6:00 am, but over the last couple of years, it's become a struggle and I've started doing what you do: snoozing and dreaming for hours on end.

I think of extreme daytime sleepiness (EDS) as being a desire on the part of my brain for the REM sleep it didn't get at night. So what if the compulsion to keep snoozing long past my scheduled wake-up time is my brain milking this period of near-guaranteed REM for all it's worth? My autonomic need for REM overriding my conscious awareness that it's time to get up? It's just a theory, but it's interesting to think about.

[incoherentswirl]

For me, "snooze" is dangerous. The dreams get confusing and I start to loose track of reality...well, unless there was a pink kangaroo that spoke with an Irish accent or other impossibility involved. Most of the time it doesn't matter, but there was a time I could have sworn I'd called in to tell my boss I'd be late...thank goodness she has a very generous nature and didn't get mad!

For me, not getting enough REM isn't a problem. REM's the stage I'm in most of the time I'm asleep, both at night and during the day; unfortunately it isn't the most restorative sleep phase. Funny how varied N can be...

[MMK]

I was thinking on this issue when i found this thread I think I never get up early . And after reading your post I feel I better tell my brain No medicine can help your only mental strength can achieve . Now will get up in morning take medicine and leave all to God . Whatever happen will go in college and present myself . If they see me in my night suite then I will tell you now give me new morning clothes as I forgot now only Mind And God can bring the situation under control

[nyemvula]

So this is a little late, but I thought I'd put a word in, because as far as I can tell, no one's responded with the same way I wake up. (although I could have just missed it. I only really skimmed through the posts.) Anyways, I'm 20 and was diagnosed with N when I was 16. I'm now in college and so far managing my mornings pretty well. I set 2 alarms each morning, one at 5:30 am and the other at 6:30. Over the years my mom and I found that I am easiest to wake around 5-5:30 in the morning, I'm guessing due to where I am in my sleep cycle at that time. Anyways, when my first alarm goes off, I sit up to turn it off, and then take my medicine which is placed right beside my clock (I take 60mg of Adderall). After that, I actually go back to sleep until my second alarm goes off. By this time, the adderall has set into my system, and it is much easier to wake up and get going. I know most people advise against going back to sleep, but this is what I've found works for me