Not Insomina, What Is This?
Posted 26 October 2009 - 09:05 AM
Let me see. It started like this, I started taking Xyrem a little over a month ago and it was going well. I saw huge improvement. But about a week ago I got really really sick. Flu. hurray for flu. ugh. I was so ill, I could not sleep right, could not use my apnea mask for fear of vomiting and inhaling it, (and could not take my Xyrem either because I have to wear the bipap.) I was literally camped out in the bathroom where I could throw up properly if need be. So it was bad. to put it mildly.It lasted about 3-4 days. I am much better now. so that is not the problem, But it set my sleep cycle completely out of whack.
Before Xyrem I was absolutely a night owl staying up till around 3 am most nights. That was my norm. Xyrem set me straight and I did very well. But now, Im all backwards. IM worse than back wards. I was backwards or a few days. sleeping all day staying up all night. I kept trying to fix it. But now, I cant. I cant sleep. It's not insomnia, because I am VERY VERY Tired. It's almost like an addiction to being awake. Even if I try to sleep, I cant because I keep thinking of things I have to do, and I get up and go do them. Or I will be afraid of missinga phone call. Random silly stuff, that never mattered before. I dont understand what is going on here. You would think that taking xyrem would be a easy way to knock me out, but when my sleeping is backwards, I cant do that. I was told not to take it during the day.
I have been up for over 24 hours at this point. I have class tonight and its going to be horrible. I want very much to just go to bed right now but I know, I will lay there for 5 minutes before I get up again. What is happening to me? Is this an off the meds deal? or something more serious? How can I fix it with out fixing it wrong? I have no Idea what to do here. Any insight will be greatly appreciated. Thanks.
Posted 26 October 2009 - 06:01 PM
Hon, what do you think happens to people with insomnia? You sound just like me. Yes, insomnia can go hand in hand with narcolepsy. Have you not read any of my posts? Sleep deprivation is a living nightmare. Sleep deprivation is a form of torture and a perfect way to brainwash someone. You have low quality sleep from narcolepsy, and now I fear that you are getting no sleep. It is HORRIBLE. I went almost two years with narcolepsy and insomnia, and it was only a few months ago that it became better. Sad to say, it's baaaack again. I told you and a few others of what it was like, and everyone thought that they understood. I hope that everyone of you pays attention to Marcia and now realize that narcolepsy alone is not as bad as it can get. I truly feel your pain, and I am so sorry that you have to go through this.
It can drive a person crazy. I'll go days without it, but my sleep doc thinks that i was getting microsleeps in without realizing it. Hopefully, you can force yourself back into a routine. Start slowly, but push your sleep time back a little bit each night or every couple nights. I've been up until 3 or 4 in the morning every night now for a few weeks.
Stay out of bed until you are ready to sleep at a scheduled time. Whether you sleep or not is anyone's guess. I know u know this.
I have mentioned many times over that I had ms symptoms. i got off all my meds for about a month and a half. during that time, i was able to get past my insomnia. i don't know how, and it was hell. it's back now, and this time i don't have a lot of diff meds to get myself off of. I don't know what to do either.
i understand completely what you mean by being addicted to being awake, and i have no clue what it is. it's like you go into this state once the insomnia begins, and you can't go back. mine started from the horrible stress at my mom's when she was sick and then died. for the longest time i was like you - staying awake thinking of things, but i got past that. it got to where i didn't have to be thinking about anything at all. and it gets so bad that i could not read so i'd just lay in bed. unlike you though, i could not get up to do things. i just didn't have the energy.
let's get past our other stuff and help each other through this. i do remember that there is an online self help course ( don't really remember what it is) that helps people work through insomnia. supposedly it has helped a few. i think i saw the post on here months ago....
it's supper time and i 'll try to get back here later tonight.
(what you're talking about is not good, but it is a heck of a lot better than i thought that it was... phew. )
Posted 28 October 2009 - 08:12 PM
Depite our past differences, Sleepless actually called me to make sure I was doing ok. I really appreciate this. It really speaks to her character.
What I find interesting is that no one else posted, called, emailed or FB me on the subject at all.
Either The forums here are getting a lot less traffic, (which doesn't make sense given the recent conference, it should actually be picking up now.) or no one else gave a hoot. That disturbs me. I hope that doesnt mean the NN forums glory days are over. I hope in the future if some one begs for help, and is clearly in distress and panicked theway I was, everyone will chime in and not just one old friend. (who is a total blessing btw.)
Thanks again sleepless. It was really good to hear from you!
Posted 28 October 2009 - 09:33 PM
I just got back late last night, and even know I really don't know you, I feel terrible that you have been going through that.
I do not have any experience in that area, so I do not have any insight. I just wanted you to know that I care, and hope you are feeling better from the flu.
I did get a phone call that some were worried about you, some people are still away after the conference. (just so you know you are cared about!)
Question: Did you plan on going off xyrem anyway, or will you be going back? Maybe if/when you go back that will help. I also don't know if melatonin temporarily may be helpful to reset your internal clock.
Posted 29 October 2009 - 01:02 AM
You better be asleep tonight!!
I was able to finally sleep late last night, but guess what? I had no internet connection so i was sans computer. Yesterday I began having hh like I've never had them before. I had them nonstop until this morning, and although none of them were scary, I began to get super freaked out because they kept happening over and over. It really messed with my sense of reality. Very scary.
Please let me know if you are not getting better. Saraiah is also quite ill right now and having high fever. Both of you are in my thoughts and prayers.
It was good to talk to you, also, and you are important to me.
NN's glory days aren't over. I just think that the previous crowd had received the help that they need, and the new people are too engrossed (appropriately) in learning of what is happening to them and connecting with others experiencing the same. You and I were here a lot, and NN was our home away from home. We were able to talk about a lot more than just N. It'll happen here again soon, and you've done a great job by bumping the quiz threads.
Don't forget: I'm always here for you. You, too, Saraiah.
Posted 29 October 2009 - 12:21 PM