8 replies to this topic

[TiredAgain]

Hi I was diagnosed about 2 years ago and some times I still question it. I have sleep episopes during the day and driving home from work is a struggle even though I am taking Adderal in the morning and Provigil around 1:00. Then when I get home do what I have to do and lay down it can take me an hour to an hour and a half to fall asleep. Yet if I was to pull off on the road I would fall right to sleep. So am I the worse Narocleptic or what?

[angeline]

I wonder if relaxation techniques would be helpful; stuff like sleep hygene, aromatherapy, massage every couple or 3 weeks; I have a friend w/narcolepsy that enjoys stretching for 20 or 30 minutes and she says it helps her relax and sleep better. I stretch regularly and it does relax me; I take elavil at nite and it helps me sleep; it also helps the cataplexy.

[TiredAgain]

Great suggestions, but my problem is during the day. I'm so tired but when I can finally lay down I can't fall asleep, but I'm to tired to do anything. I do eventually fall asleep but it could be like an hour later. I like your suggestions for at night, I can usual fall asleep but I don't usually stay asleep so relaxation theraphy may help with that.

[Niki V.]

I want to start out with that I do not doubt that you have trouble sleeping at night....but are you sure that you are not really in a sleep cycle during that time you feel that you are awake. The reason I ask this is my husband, which we have been married for 14yrs now, tells me that he can tell when my "Body" is asleep but not my mind. My body twitches and jerks even though my mind is going 100mph in thought. He will move me to make me wake-up completely and position myself differently so I can fall asleep completely! I have done this for years and we never understood it!

This is just something I do and thought I would pass the info along, maybe it will help. But I can tell you that I have had a lot more periods of insomnia since starting my meds. The doctors tell me if I don't stay on a regular schedule with the meds that my body is actually going through withdraw from them causing the insomnia, that's another thought!!!! Hope this helps!!!!

[TiredAgain]

I do have problems once and awhile at night but my biggest problem is during the day. I get out of work early like 3:00 I work with special needs children, then I drive home which can take between 30 and 45mins. Driving home is real hard I nod off at least 70% of the time and the other 30% is a fight to stay awake, but when I get home and do what I have to do which can be like 10mins then I lay down it takes forever for me to fall asleep, but I'm to tired to get up and do anything. Then I will start dozing off and on for like an hour and then I feel worse. If I was to pull over (which I have done) I would fall right to sleep. Just this morning I stayed in my car when I got to work and put my head back for like 10mins and then I was okay, I don't even think I fell asleep.

I do think the same thing happens to me that happens to you. I will be laying there and my mind will be going and I will be wishing I could fall asleep, but I then my body will jerk or I will snore loud and wake up. My ex-husband used to tell me that my body would jerk like 10 times before I would fall into a deep sleep, most of the time I would wake myself up when I jerked. I find this whole sleeping thing strange and the reason I question the having N is because I lot of people say these things happen to them. I did have a MSLT where I fell into REM 4 out of the 5x's and they ranged from 0.5 - 3 mins.

Thank You for answering my post

[Niki V.]

I wouldn't question your diagnosis. A lot will say that they have a lot of the same symptoms and when you really question them they go to bed really late at night and get up really early and only get like 4-5hrs of sleep each night. Everyone would be tired running on that amount of sleep everynight!!! Now granted there are a lot of people out there with Narcolepsy and they don't even realize it because they just think they are not getting enough sleep.....even though they may sleep more than most people!

My nap study, I went into REM 5 out of 5 times in less than 7 minutes on each, but I didn't feel like I had fallen asleep any of those times! I could swear that I only closed my eyes for a few seconds..... The tech didn't even want me to drive home because I was not on meds yet. She was scared to let me go because of the level of my "being fatigue/sleepy" according to their test!

You have to put all your symptoms together and remember that no matter how much sleep we get, we are still sleepy or tired and never feel fully rested. I look back and now realize how much of a fog my brain was in, working through the fatigue and I don't see how I did anything during that time!!!

[TiredAgain]

Funny how different techs react so differently yours didn't want you to drive because you averaged 7 mins to REM and I averaged 3mins and I felt like my tech couldn't wait for me to get out. I'm taking Adderal and it seemed to help for awhile but I'm not getting much out of it anymore so my DR. added Provigil in the afternoon even though Provigil didn't work for me before, but that didn't work either so I don't even bother with that.

I feel like I'm in a fog 75% of the time which can make work really tough. I work with special needs children and I get called in when their behaviors are getting out of hand for the classroom. So I need to have my head clear and most of the time when adrenaline is going I'm ok, but afterwards when meeting & writing things up with my co-works I find my brain fog to be so bad. I'll be in mid sentence and forget what I was saying. Have you every heard of this happening?

[Niki V.]

I hate the mid sentence pause..... I don't know how many times I have done that. I know what I want to say but can't get it out or completely forget what I was saying all together!!! The fog is the worse! I wonder some days if everyone wishes I was back in the fog and would just work like before, because I am mentally alert now and notice all thing they are doing and shouldn't be!!!! LOL

The tech I got was great she really seemed to understand and take pride in her work.... I work in a Dr's office and don't get much understanding. I don't ask for any special treatment and I can't even mention the "N" word without getting dirty looks like I am crazy!!!! I work more hours than several and I don't take naps during the day and I still get the looks!!!

I am taking Ritalin SR/LA 20mg twice a day and plain Ritalin 20mg twice a day and I am having pretty good luck with it so far. I didn't have much luck with Nuvigil/Provigil, it helped a little but I had severe GI issues with them and they would have cost me $600 a month if I would have not been given samples from my doctor at the time to try!!!

We just all have to do the best that we can and more forward with where life takes us!!!! Best of luck!!!!

[TiredAgain]

Even working in a Dr's office nobody understands that's bad. I had to go see a couple of new Dr's lately and they have all looked at me strange when I say I have N and they all say really. One even questioned me and since he was the thrid one I was going to in 3 weeks I brought my own little medical file. When he questioned me I pulled out my MSLT results and he still said that's an odd thing.

Thank you for responding