Narcolepsy Support Group

A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.

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Treatment: Stimulant vs. better sleep at night?

Hi everyone. I have had symptoms since I was 19 (I am now 23 years old), but was recently officially diagnosed with narcolepsy. I am on a stimulant called Focalin XR (I believe this is the generic name). It works great, but I have HORRIBLE trouble waking up in the morning! I set seven different alarm clocks in the morning to make sure I get up (hopefully one of them will do the trick!). I know snoozing is not good, but I can not physically get up when my mind is still in that dreaming/sleeping state. I snooze all of the alarm clocks for two hours on average until I can get up. I am a graduate student, so it is crucial that I get adequate sleep AND am able to stay awake for class/clinic!

Does anyone take medications at night to sleep better? Do you take these in addition to daytime medications?

Thanks!

Replies

deleted_user
deleted_user

Hi LJ,

Many of us take medications to help us sleep, I take Trazadone, I am going to start taking Melotonin, many PWN take this and it helps them sleep better. I know the Trazadone makes me feel hungover in the morning so I don't take it much.

I was wondering though if you could do I what I have been trying. I set my alarm for about 1/2 hour before I really have to be up. I take my medication-ConcertaER, then hit the snooze and sleep for a bit more. Concerta seems to start working for me within about 30-40 minutes. So by time I lay there for another 30 minutes or so that fog starts to lift, I don't feel as groggy and sleepy and I can at least get up to get the coffee in my system, LOL.

I am glad you have a med that helps you so well during the day. I had forgotten about Focalin, my son used to take that for his hyperness.

And yes, most PWN that take sleep aids still take stims or something during the day to help with the EDS and other symptoms.

Best of Luck,
Troll Kimmers
deleted_user
deleted_user

Thanks so much for the reply! I just joined this website today, and I'm liking it already. It's funny that you mentioned setting the alarm a half hour before you REALLY have to be up, taking meds and then snoozing... I just thought about trying that tonight. It's gotten to the point where I snooze for two hours! I can't afford to snooze much longer.... Thanks for the input!
deleted_user
deleted_user

Unmedicated, I have an INSANELY hard time waking up... I use to sleep through, well.. everything. I knew I couldn't take morning classes, my friends would POUND on my window for 15min before the noise would work its way into my dream and i'd eventually very hazily wake up. I'm on Desipramine now, and it makes a world of difference. I still have my days, but my quality of sleep is so much better. Only thing my sleep doc can knows is that it decreases REM sleep so thats something to do with why it works. My mom and I both take it for the same thing.. helps a lot with the daytime sleepiness too. Been on it about 3 years now. (and when I've gone off it... I realize I have forgotten how bad it can be without it.. and can't understand how i managed so many years!).

i also am on Adderall. I took others suggestions on here when I first started it (2 yrs ago now) and keep it by my bed. I need 15mg to wake me up, so one of my numerous obnoxious alarms usually wake me up enough to eat something (i keep a lil bag of crackers or some kind of mini snack cuz it upsets my stomach otherwise) and the meds and then promptly pass back out. then about 30-40min later, the adderall helps me wake up feeling much more awake.

Good luck!
deleted_user
deleted_user

I sometimes take a 5mg Valium to help me go to sleep. I just decreases sleep latency. Meaning it works quickly and wears off in just a couple of hours. My N usually keeps me asleep. Sometimes I feel just as you described. When my alarm goes off I have the Ritilan by the bed so if I need to I take one. In 30-an hour later I wake back up and am ready to get up.
deleted_user
deleted_user

We must all be on the same wavelength about the medication then back to sleep until it kicks in thing! I also use my Happy Light when i feel like I might just snooze the day away. For example, I'll wake to take my med. Go back to sleep. Snooze or set another alarm. If I still feel like my body just weighs too much to pull my self out of bed, I turn on the Happy Light and keep the secret weapon alarm as another backup.

The secret weapon alarm is the loudest most obnoxious alarm I found that I put out of sight and across the room. I needed it a few times, but mostly just use it when I absolutely have to be somewhere and am afraid I will oversleep.

I also take Nuvigil, Effexor XR, and valium. And coffee. lots of coffee. But I have been known to drink a pot of coffee and go to sleep. Good luck honey!
deleted_user
deleted_user

Oh yeah, I also added vit D3, mulitvitamin, and the occasional melatonin.
deleted_user
deleted_user

Thanks everyone! I recently started taking Xyrem, and it's been really great. Now I am just concerned that my memory is worsening and I seem to have increased anxiety. I currently take something for the anxiety, but maybe that needs to be changed.

In terms of waking up, I got a special alarm clock that people who are hard of hearing/deaf use to wake up. It vibrates the bed and flashes an obnoxious light at you! Unfortunately I have a roommate, so I don't use anything loud. BUT this alarm clock has that capability too! So I recommend you guys try it if you're still having trouble waking up :-)

Does anyone know if Xyrem can cause/increase anxiety? Should I follow up with my sleep specialist who prescribes the Xyrem, or my doctor who prescribes the anxiety meds?
deleted_user
deleted_user

Hi LJ,

Always bring it up with your sleep specialist. Regular doctors hardly know anything about Xyrem as it is a medication used only for N or other heinous sleep disorders. Most doctors look at me with a blank expression when I tell them I take Xyrem and they ask "what is that?"

So, basically, your sleep specialist will best be able to help you regarding the anxiety you are feeling and whether it could be linked to Xyrem use.