Narcolepsy Support Group

Does this happen to any of you? You set your alarm clock but you can't hear it. You can't hear the phone ring or the radio. I have slept thru appointments...not good.

Any suggestions?

Post edited by: smd, at: 04/07/2013 01:51 PM

Thanks smd....I'll look for that Sonic Boom...lol.

I've complained about this to my doctors but never asked them about alarm clocks.

I'm getting the feeling that this is not that common..........I'll have to check that out. I just assumed it was the deep sleep that narcos fall into.

Nah- I'm with you! I have a HECK of a time reminding my Dr's that no, I don't have insomnia, yes, I can document sleeping through a floor sander and crowbars 6 feet from me... there isn't an alarm clock made that can wake me up. I used to think if I could record the sound of the cat having a hairball... but I've slept through that happening on the bed too! Sorry- TMI. I use a human being with uncommon stubborness, two cats who will stop at nothing for pets (turns out a claw on my eyelid will wake me up) and it still takes at least 30 min before I can wake up, and at least an hour before I can think! I am capable of walking across the room and unplugging a clock in my sleep even! I have my first pill in me before I put my feet on the floor! As a kid, I viewed Christmas morning as a good thing as I could sleep in, no school!

So yeah, maybe we're weird, but ah well, beats being average!!

hey- if you try Riddalin and it puts you to sleep and drops your BP- let me know! We can form and alien hybrid support group!

I am having the same problem and was basically told by my doctor there isn't anything medically to do but I'm too stubborn to believe that. It doesn't happen every time I sleep but its like I only have days on either extreme. On my good days I can wake up without a problem and stay up all day with the help of my medicine but on my bad days, I could probably sleep through a tornado ravishing through my room (which brings up a whole new safety issue if there was a fire or something else but that's another story). My medicine seems to have no effect on me once I do wake up and I'll usually be back asleep within 4-5 hours.

I'm in college and miss so many classes because I cannot wake up, which is embarrassing for me to mention to my professors because it sounds like a cheesy excuse for partying the night before or being too lazy to go to class. I have five alarm clocks, including the Sonic Boom that vibrates your pillow/bed. They are scattered throughout my room and are all set 5 minutes apart from each other but that still doesn't phase me on my bad days. I've been tempted to get a video camera to record me sleeping because I'm curious to know if I actually get up while still asleep and turn them off or if I just let them go off for the thirty or so minutes before they turn off by themselves.

Either way, this has caused so much turmoil and deep depression in my life. I have been so dedicated and worked hard my whole life to get into vet school and become a veterinarian. This waking up issue has not only slowly started to crush my dream but it has now made me question if I'll ever be able to even hold a full-time, permanent job in general.

I know this post and past comments were made a while back but since then has anyone seemed to find a good solution?

i have the same problem but i think it's improvement with me when sleep without air-condition and dinner, with a big alarm clock

Post edited by: zizo1987, at: 04/22/2011 11:57 PM

I have bought at least a dozen alarm clocks, non of them wake me. I live in a boarding home and now, when I need to get up for an appointment, I tell someone and have them come bang on my door. And if I don't get up and open it, they have a key to my room and I have them let themselves in and pull me out of bed. Not just wake me up, but literally pull me out of bed and across the floor. Or I'll just sleep until God knows when.

Momstootsie, I'm new to the group

I have an alarm clock called the Sonic Boom. You can find it on amazon I think. But it sounds off at about 105 dbs. Very loud. I think it was made for people with N. Plus, I also have to set my phone alarm and I have to answer a few math questions before I can "dismiss" the alarm. I still fall back to sleep sometimes, but it is rare. Try setting multiple alarms. And put one on the other side of the room!

My situation is very similar to kgale123. I'm also in school and have a job that I sleep through quite often. A lot of times I will not wake up until late afternoon/early evening. I do all the behavioral tricks thats doctors have recommended. Nothing helps. Please let me know if any of you find an alarm or medication that helps wake you up. My doctor also told me there was no medication to help wake me up... which I too refuse to believe.

Hey! That was me to a tee, until I found a narcolepsy specialist 4 years ago and he put me on Xyrem. It's liquid, it might seem like a pain (take twice a night) but it is WORTH IT. Just graduated from PA school, coulda never done it without Xyrem at night and a stimulant (Ritalin for me) during the day. Xyrem is what helps fix the root of the problem tho, on a nightly basis. Still tho, I have trouble getting up but nothing like before. If I go back to sleep, it's over, I'll sleep in regardless of alarm clocks; well sometimes. I have many back up alarms clocks, quite creative ones. One I record on, you can say like get out of bed now, no matter how much it hurts or else you'll miss work! And right before that goes off, I have a super loud one that I also put the vibrator portion by my headboard (just stick it in

the crack) so it vibrates right by your head and makes an awful noise. As for getting up in the middle of the night to take the second dose of Xyrem (sodium oxybate), took me years to figure it out: I have another vibrating clock w the vibrating part go off by my head, and I have another clock that's sitting on something across the room that goes off 30 seconds or a minute later, & my 2nd dose of Xyrem is sitting right in front of it, so that I know why the heck I'm getting up. When I would put it next to my bed I would never have a clue why that 3 AM alarm was going off haha. I'm much better now but I'm still worried about starting my first job as a PA so I got a landline that gonna sit next to my bed, and I'll ask the girls at work to call me if I haven't shown up by 8:30 or something.. And not gonna lie, during rotations, if I was having a particularly hard time getting up, my mom would call me; no the ring would wake me up but I'd set the awful vibrating thing by my head to go off right before she called so that I'd answer & she'd talk to me until she knew I was awake and making coffee downstairs or w/e. Having a nice roommate who will check to see if ur up is AWESOME as well but harder to come by, bc of schedule differences etc. I wish you the best of luck -- it is possible to get your life back! Plz see someone about Xyrem. If u don't have insurance, they have a patient assistance program -- sure it requires paperwork but you will get your Xyrem covered. It's an awesome thing. It took me years to figure out the dosing bc you have to increase slowly but it's doable and worth it! I'm a much happier and accomplished person now -- I've got fired from like 5 jobs before I got Xyrem and then made it to PA school! My prayers are with you.