Narcolepsy Support Group

I have the same problem about being scared to sleep. I even took my sleeping pill tonight, and it's not enough to zonk me out in spite of the anxiety.
I'm scared of the nightmares. Scared of not being able to tell what was real. Scared of hallucinations, or waking up and not being able to move. Worse, I'm scared of staying up so late again I just sleep all day when I finally pass out.
I don't know what to do either. I thought my Lexapro was supposed to help with stuff like this.

I'm sorry you probably don't have the option to sleep during the day like I do. I so need to get out of that, too. Schools starting up in a few months and maybe looking at a new job!
I hope that someone has good suggestions for us!

I get the same thing with nightmares, they carry on even if I wake up, get up and go back to sleep. Who would think that dreams could seem so real. The only way I seem to be able to break the cycle is by taking diazepam and then staying awake for about ten minutes. This nearly always works for me. I had a job talking my doctor around as he figured it would make me more sleepy in the daytime.

I used to be just like you. I actually posted once that I was scared to go to sleep and someone asked me why and I said all the same things you are saying. The one thing that has helped me is Xyrem. It took about a week to get used to it,and feel comfortable with falling asleep. Since I have been on it no SP, only a few nightmares where I wasn't sure if I was awake or not, and only 1 C attack. I know it is not for everyone but if here is anyway you can at least try it for 1 month, I highly recommend it.

What came to my mind was using a relaxation tape before bed or as you fall asleep. There are many of them, that direct your mind to pleasant scenes, sensations and senarios. We used them with some success with trauma survivors who have difficulty with nightmares. Also there is some research that they may work even better if it is done in your own voice. I will look around on the internet for a script. I also wonder about biofeedback with narcolepsy symptoms...it seems like a natural to me-it being all about learning to control your brain waves, etc, but a haven't been able to find much information about it. I had done a search a while back. Also through hypnotherapy or EMDR you may be able to have a safety word that you can say in a dream to wake you up. Again a technique used with trauma survivors. Although my dreams are very vivid I almost never have negative dreams. If I think of anything else I will let you know.

Thank you for your replies so far!

Krazeekatt- I know what you mean about being scared of not knowing what is real...that one can be really frigtening and almost makes me question my sanity. You are right when you say being scared to stay up because of sleeping too much the next day. On the weekends I stay up to avoid the nighmares and then I have to sleep in that much longer and feel like I wasted the whole weekend. During the week I work so regardless if I want to or not, I have to get up and go, it just makes my workday all that much worse. Not good either way sometimes!

Andrew-
Thanks for your input as well. I do have ativan (lorazepam) which is quite similar to the med you take at night. It ususally does the trick and sometimes just knowing I have it if I need it does the trick also. Lately this has not been helping, the past couple of times I tried it did relax me more but still had the bad nightmares. I am hesitant to take it every night because my doc does not give me a whole month supply each month. It is only supposed to be used as needed so I ususally only call for a refill once every 3 months. I have a .5 mg pill and maybe I will try to take an additional half a pill with it. I am able to take up to two at a time but that seems like alot to me....but i guess at this point I am willing to try.

Cheri-
I am not sure about the Xyrem...I have only been on two actual meds for N as of yet and would hope that if I needed to try that one it would be as a last resort. I am very happy that it seems to be working so well for you. Maybe it is just because I know what the other use of Xyrem is that makes me hesitant to use it...just not to sure about that yet. Your positive experience with it is wonderful and I will keep it in the back of my mind.

Marilyn-
I think I know what relaxing tapes you mean...like sounds of the ocean type right? I had completely forgotten about these types of tapes and I will be looking into that for sure. I actually used to have a cd that had ocean type noises but was not to fond of that particular one because I have awful anxiety towards water...I can not step foot on a boat because of terrible sea sickness. I know that this may sound odd but the sounds of the waves even gets to me. LOL. Maybe another type would work though.

Thanks guys for your comments and by all means if you come across anything else please share! I have an appointment with the sleep doc in August and I will bring this up and also see what he thinks...

Thanks again!
Julieanne

I have had the same problem with the dreaming, it seems whatever is on my mind before I go to sleep, that's what i'll be dreaming about. And somehow a negative twist is always added, turning it into a nightmare. I have problems with sleep as well, I never used to be able to sleep more then 2 hours straight. So I talked my doc into giving sleeping pills. First I tried trazodone which kept me sleep, but the nightmares got worse. Then I tried ambien, and its worked wonders for me. I have zero dreams, for the most part... and I sleep for like 6 hours. And believe it or not, I'm even doing better during the day with the EDS. I've tried all kinds of meds, Xyrem, provigil, amphetimines, and the ambien has had the best results with the least side effects. Its an option....

Good luck,
Rick

The Ocean ones can be good but I was really talking about ones where there is a person speaking, verbally describing pleasant situations, safe place, etc....just thinking because I know that when I fall asleep reading I continue the story...so if one fell asleep with the mind already visualizing pleasant safe places etc...I figured it might continue on in the vain. That part of the brain that has all that plesant stuff would be activated...so might not it ccontinue on. And no if you fear water, ocean waves would activate the way wrong parts of your brain!

Here are some examples of scripts and how to develop your own script. When I would make these for clients I would discuss with them what imagines, colors and scents etc, were calming for them and taylor the tape to their specifications. As in your example, you want to know that that someone has a fear of the water before you verbally take them out on a boat! We all don't have the same associations in our brains!
I have a big thick expensive book that I bought years ago with scripts
for dozens of specific needs...just can't find the darn thing --but I will look more today...a good reason to clean out a few closets.

http://www.ethicsofchoice.com/ReSc...
http://www.twc-wla.org/images/Guid...
http://www.naturallysavvy.com/blog...

Hi

This happens now and again to me, but a few years ago i had very vivid dreams and like you have said you sort of know that you are dreaming and that you should come out of it but you can't. My dreams would make me move around alot and scream and they were awful to have. I use to dread going to sleep. I eventually went to see my doctor and discovered that the drugs i had been taking for the past 8 years had started to react with me. They didn't work as well as they use to. I had my medication changed. Maybe it's an idea to go to your doctor to check that your drugs are working still and that you are on a high enough dosage. My medication was the last thing i thought about at the time but i'm glad i did.

Hi,

I am very new here but I wanted to give Xyrem a plug if you will. I have been taking it for several months now and it has been the single best treatment I have tried for any of my illnesses, I have MS also. Please look into it. Many drugs have street use appeal, just remember you are not using it for that reason but to help you get the rest your body desperately needs. I wish you luck and my prayers are with you that you find a solution soon.