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#1 browndog319

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Posted 30 November 2013 - 09:22 PM

So I started Xyrem a few weeks ago - my doctor started me at 4.5/2.5 per night. The first night was fine, although I was mildly freaked out by the slide show that played in my head as I was falling asleep and the bedspins. The sleep was amazing. The second night I expected the freak show so it wasn't as upsetting, but I didn't like it. The next day, I felt like I had the flu - chills, runny nose, general malaise, and totally nauseous. Pushed through until tragedy on night 4... I took my second dose and I immediately vomitted it right up.

 

I obviously didn't redo the second dose - my Xyrem was downstairs and I was fairly loopy. I also was worried that maybe I could somehow cause an overdose even though I threw it up pretty immediately. I also didn't want to aspirate. So I didn't sleep at all that night because I also didn't dare take my beloved Ambien sitting in my nightstand.

 

I called the Success program and my doctor and they lowered my dose to 2.5/2.5. I waited a few days to let my stomach heal and to let my fear subside. I'm tolerating this dose. I've been able to go a week now and just now I'm starting to feel a little nausea that lingers throughout the day... it's not awful, it's just there. Luckily I'm able to sleep on this dose, although I know it's not as good as the 4.5 was.

 

I'm supposed to move up to 3.0 later this week. I'm really nervous about it. Just trying to get my nerve up. I was glad to find this forum because I have never met another narcoleptic. It has been helpful to hear about all of your experiences and to not feel alone. I'm a few hours from Michael Jacksoning myself for the night.

 

 



#2 britneyadams

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Posted 01 December 2013 - 11:29 PM

Make sure you are drinking lots of water!!!!  Also think about a multi vitamin!!!!  Once I figured that out a lot of my symptoms (like nausea) subsided.  The salt content does a lot to the system.  I had a really rough transition, and I became scared to take my xyrem.  But I'm glad I pushed through it, because things are starting to look up.  Xyrem is kind of a long process.  Only you know what is best for your body, but I would encourage you to stick with it.

 

I also had flu like symptoms my first week.  I didn't think it was related, but maybe.  



#3 browndog319

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Posted 02 December 2013 - 10:17 PM

Thank you... I could definitely increase my water intake. I never take vitamins, so I could definitely add one of those in, too. I'm really nervous about bumping up to 3.0. I will make sure I have the multivitamin on board before I do it. I definitely want to stick with it. The sleep is GREAT and it's weird to wake up and not feel like I want to die getting out of bed. I do feel slightly nauseous, but I can get out of bed without an hour's worth of hitting the snooze button and feeling actual pain upon waking.

 

Really helpful tips, though. Thank you! I appreciate it!

I have to fly to Dallas for work on Wednesday - I'm weirded out about traveling with it. But I'm going to do it.



#4 b.chrissie@yahoo.com

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Posted 03 December 2013 - 08:32 AM

I have experienced some very unfortunate side effects from Xyrem, I started at the lower dose and went up .75 each week. After the second incident (the bedwetting :( ) I was ready to call it quits completely. I also got a new sleep doctor. He, and many others, have said so many great things about Xyrem, even though it can take a long time to adjust, that I was convinced to give it one more try.

The new doc has me at the lowest dose for a month for starters. I am hesitant but am convinced that it can be a great therapy. If the incontinence happens again though, I am done. I didn’t even do that in my youth so it was quite a shocker for me. Both times was at the highest dosage so my doc is convinced if I titrate much slower it won't happen again. Good luck and try to stick with it. I have heard and read great things about it, though it is scary.

 

Also, I traveled recently and skipped my Xyrem while I did. I just took my stimulants during the day. It was a short trip but I did okay. Good luck!



#5 browndog319

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Posted 03 December 2013 - 11:03 PM

Thank you! I'm packing now for the trip and because of the hour I have to leave for the airport, I can't take the Xyrem tonight... So I'm just going to do my Provigil tomorrow. It's probably better to not fly with any nausea anyway. My intention is to bring the Xyrem with me when I leave tomorrow, but I might change my mind. There will be work dinners and I'm realizing it might be hard to control the eating thing.  I really need about 4 hours between my last meal (and it REALLY needs to be a light meal) and my first dose. 5 or 6 is even better. And then I have to explain the no drinking thing. And then people will think I'm pregnant rather than on a medication...

 

I would probably not be happy if I had the bedwetting side effect. Thanks for the encouragement. It is scary. Good luck to you, too, as you titrate slowly. I think/hope it's worth it, too. The sleep is SOOOO good. :-)



#6 Jennell

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Posted 05 December 2013 - 10:51 AM

I laugh about the CUH-RAZY bizarre a** dreams I had early on with Xyrem...five months later they are still crystal clear and give me the heebie jeebies!! LOL  Wes Craven on a bad acid trip couldn't come up with these dreams!!

 

Lawdy!!

 

I add the liquid Crystal Light to each dose - quite a bit too! And it sure does help it go down smoother for me. Wonder if that could help at all - I get "gaggish" when things taste weird...personally Pomtini is my fave flavor for it. Makes it a nice dark purple - which seemed odd originally, now that's how it looks to me!

 

Good Luck to all of us!! Not that I even really am a luck kind of person but how do you quickly say, Oh Please Gawd, Help Us All Find Rest & Energy at the right times and in the right proportions!! :D



#7 browndog319

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Posted 07 December 2013 - 12:55 AM

I've only had one dream and it was NOT fun... It was a dream where I was setting up for a work meeting in the least productive way possible and I was late (in a way I WOULD NEVER DO IT!) but I'm watching myself eff up this meeting and getting really annoyed. And then the meeting got really contentious. And someone said, "whatever, you're meeting wasn't even set up right or on time!" And I could NOT WAKE UP. But this is the only dream I've had.

 

I believe in the Law of Attraction, namely that Like attracts Like. So yeah, this part of our lives is a bit rough. But if we focus on the other good stuff we have and change how we communicate our desires. Think about this:

 

I want a new car/my car is old

 

By focusing on what you ACTUALLY want, eg, the new car, you are attracting what you want. Like attracts like . With this law, if you keep your energy up and keep focusing, you will get your car. So give this a whirl and see if you can get the rest you're seeking.



#8 b.chrissie@yahoo.com

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Posted 10 December 2013 - 12:22 PM

I've only had one dream and it was NOT fun... It was a dream where I was setting up for a work meeting in the least productive way possible and I was late (in a way I WOULD NEVER DO IT!) but I'm watching myself eff up this meeting and getting really annoyed. And then the meeting got really contentious. And someone said, "whatever, you're meeting wasn't even set up right or on time!" And I could NOT WAKE UP. But this is the only dream I've had.

 

I believe in the Law of Attraction, namely that Like attracts Like. So yeah, this part of our lives is a bit rough. But if we focus on the other good stuff we have and change how we communicate our desires. Think about this:

 

I want a new car/my car is old

 

By focusing on what you ACTUALLY want, eg, the new car, you are attracting what you want. Like attracts like . With this law, if you keep your energy up and keep focusing, you will get your car. So give this a whirl and see if you can get the rest you're seeking.

browndog319:

I am a HUGE believer in the laws of attraction so thank you for the reminder. I need to visualize myself more rested and awake. Thanks again!



#9 browndog319

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Posted 10 December 2013 - 10:35 PM

I wish there was a LIKE button on here!



#10 browndog319

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Posted 12 December 2013 - 10:27 PM

So the last two nights I have been living the Xyrem dream. I fell asleep and I'm apparently used to falling asleep like I'm at a rave now... I woke up 2 hours each night after the first dose and, realizing it was slightly too soon to take my second dose (and the fact that I was still flying), I tried to sleep again and did until my alarm woke me for #2. On one of these threads, someone said that waking up on Xyrem after two hours was a sign of making it through a complete sleep cycle - I don't know if that's true, but I'm totally going with. Took #2 and slept for another 3.5/4 hours. Last night I actually had vivid, technicolor dreams before I woke up! I felt sort of rested.

 

My nausea side effect has subsided. I have a little bit of a headache, but I'm prone to migraines, so I don't know if it's the Xyrem or me. I have to titrate up to the next dose. But I feel like I've really gotten this dose. I'm starting to feel hopeful. :-)



#11 b.chrissie@yahoo.com

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Posted 15 December 2013 - 09:24 AM

Hey guys, quick question for you. I am starting my Xyrem titration all over again and have been at the lowest dose for a month now, thinking it isn't quite effective at this point. Have you guys had crazy dreams and lots of them on the Xyrem? I have them normally so I can't tell if it is because of the Xyrem or because it is not effective at this dosage.



#12 browndog319

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Posted 15 December 2013 - 04:09 PM

I don't dream like I normally do... I have awesome dreams in my pre-Xyrem life. I am still at the 2.75 dosages. I need to move up to the 3.0 dose. But I did dream the other night finally on the 2.75. They were vivid in terms of color, but they were not as memorable as my other, non-Xyrem dreams. Those were detailed, involved, and very often involved flying. And I could feel it. I kinda miss flying dreams.

 

When I dream on the Xyrem, it's usually before I wake up for good. I take it as a sign that I made it through all the sleep cycles. Any chance that happened with you?



#13 browndog319

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Posted 15 December 2013 - 05:41 PM

Another new one to report, as well. Last night, I woke up in between my 1st and 2nd doses as I've been doing. I still felt the drug really strong, so I tried to go back to sleep. As I was going back to sleep, I felt more nauseous than I have recently. But I was able to go back to sleep. My alarm went off for my second dose. I always need to go to the bathroom between doses so I get up before I take the 2nd dose so I don't have any of the waking up in the bathroom situations I've read about... coming back from the bathroom, I had to grab the wall because I nearly fainted. The room was spinning. I dropped to my knees and crawled to my bed. I was able to get back to bed. I'm not sure if I passed out or fell asleep. I never took my second dose.

 

Has anyone had this happen before? It's been going so well. It freaked me out. And I felt well all DAY... waaahhhh!



#14 Jennell

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Posted 16 December 2013 - 11:04 AM

Hey guys, quick question for you. I am starting my Xyrem titration all over again and have been at the lowest dose for a month now, thinking it isn't quite effective at this point. Have you guys had crazy dreams and lots of them on the Xyrem? I have them normally so I can't tell if it is because of the Xyrem or because it is not effective at this dosage.

 

 

Yes, I had crazy dreams on the lower doses of Xyrem. Earlier in the thread I said Wes Craven on a bad acid trip couldn't come up with the bizarre things I dreamed. Everything I understand is that when the Xyrem is working right you'll have dreamless sleep. I think what BrownDog319 refers to as dreams just before waking is what the Xyrem experience SHOULD be. I actually seem to have a lot more vivid dreams in general even though I've been titrated all the way up to 4.75/4.50, but not as intense and strange and disturbing as on the lower doses. There was a Voodoo Heroin Africa Medicine godish thing in the weirdest one!! LOL Except it wasn't heroin - it was the Xyrem they were injecting and they were stealing all my Xyrem!! I can begin to giggle about it now. But seriously disturbing technicolor dreams!! 

 

From everything I understand about Xyrem (and there are other more educated members than me) at the lower doses most people don't hit the dreamless sleep. From what I can figure the lower doses are simply to get our bodies accustomed to the medication so that we don't go from 0-200 mph so to speak and oh, well, I don't know, kill ourselves with too strong a dose!!

 

 

Another new one to report, as well. Last night, I woke up in between my 1st and 2nd doses as I've been doing. I still felt the drug really strong, so I tried to go back to sleep. As I was going back to sleep, I felt more nauseous than I have recently. But I was able to go back to sleep. My alarm went off for my second dose. I always need to go to the bathroom between doses so I get up before I take the 2nd dose so I don't have any of the waking up in the bathroom situations I've read about... coming back from the bathroom, I had to grab the wall because I nearly fainted. The room was spinning. I dropped to my knees and crawled to my bed. I was able to get back to bed. I'm not sure if I passed out or fell asleep. I never took my second dose.

 

Has anyone had this happen before? It's been going so well. It freaked me out. And I felt well all DAY... waaahhhh!

 

 

Between doses when I go to the bathroom I also have the SEVERE dizziness and like you have often had to hold on to something to not fall down. For me the Xyrem makes me super super dizzy always - it doesn't make me drowsy so much as it makes me so dizzy I can't lift my head off the pillow after taking the dose. I understand this was new for you and therefore frightening, but I don't think it's anything to be worried about as one of the biggest reported side affects is dizziness. Hopefully you can go back to not having it, but even if it remains between doses, it is just something to compensate for (i.e. clutching the wall all the way to the bathroom and back!!). I pretty much always have it between doses and just get super willful that I'm NOT gonna let myself fall over no matter how bad it is. At least so far that's worked for me. :)

 

Now I have a question if anyone has had an experience with the taste changing for them....as I've mentioned in this thread and others I mix Crystal Light liquid flavor with the medication, but, wow, the last few nights even with that, Oh My Goodness!! The saltiness is almost overwhelming...hmmm....thinking about it, it has been since I "opened" a new bottle...wonder if sometimes the salt mixure gets a little out of whack. Perhaps I'll try a different bottle and see if I notice a difference.

 

Another development for me is that for the loooongest time I couldn't get past an hour or two on the first dose and went with a stronger first dose to get me through a few hours til the second dose.  The last three or four weeks, right after only being able to sleep three hours on each dose and still being EXHAUSTED (but completely unable to sleep more), I now am sleeping four to five hours EACH dose!! I've never even needed the alarm for the second dose cuz I always woke up way before the four hour mark (lots of times even before the 2.5 hour mark of being able to take the second dose), and last week after oversleeping a couple days (another first for me on the Xyrem!) I decided to set the alarm at the three hour mark and take the second dose. That morning, for the first time since starting Xyrem, I slept THROUGH both phone alarms!!! Woke up an hour late, shocked and befuddled. So now I'm afraid to take the second dose without waking up from the first dose naturally....problem is as I've been sleeping longer on the first dose I'm having nights where I don't have enough time to take the second dose!! And to allow enough time for a full night's sleep on both doses it feels like I have to back my bedtime out to a time when I'm just not sleepy yet!! Granted I still suffer horribly from that five year old syndrome of "I don't wanna go to sleep cuz I'm afraid I'll miss something!!" I'm terrible at it.

 

I had really bad experiences of taking the Xyrem early on when I wasn't sleepy and I'm nervous about taking it an hour or two before I feel sleepy and if I don't go to sleep on it, wowzas do I feel like crud!!  Dizzy and miserable.  Saw the dr today and I was surprised that he opted with lowering the second dose (over the first dose) for a month. But we'll see how that works. I am realizing that it can take longer to really settle into a sleep pattern on a dosage level than I had originally understood. I have been on this dose since mid-September and it took really til mid November to start getting maybe full efficacy. I'm just fine with lowering my dose as long it keeps getting me the sleep I need!! (And it's crazy to figure out from my monthly Xyrem "statement" how much the annual cost is - last count: $111k!!)



#15 browndog319

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Posted 18 December 2013 - 10:05 PM

Thanks for the feedback on the dizziness. I haven't had it again. I don't know what made me feel it that night. It was totally scary, that's for sure. I don't know what I'd do if I felt that way every night.

 

Let me know how the dose adjustment goes. I can't believe you're sleeping through your alarms. I'm now getting to my first alarm. Waking. And now waking up about 15 minutes before my wake up for the day alarm Which is about 4.5 hours after the 2nd dose.

 

I totally get the "I don't wanna go to sleep cuz I'm afraid I'll miss something!". I'm actually pushing back my first dose by half an hour and taking my first conference call from the road (!!!) so I can finish watching my college basketball team tonight. Ridiculous, right? But so far it's a great game and it will probably go down to the wire... God forbid I read about it online tomorrow! I also have a really hard time with the eating early enough. I find that I really can't eat about 3/4 hours prior to my first dose or my stomach feels like I have rocks in it.

 

The Crystal Light thing - I didn't find that strong enough so I use Lipton diet iced tea. It's flavor is really strong and overpowers the lousy flavor pretty well. I've also found that shaking the heck out of it before drinking it really helps.

 

I really hope the lower second dose helps!



#16 Jennell

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Posted 23 December 2013 - 03:39 PM

Well - as far as the Crystal Light goes I use the liquid version and put a VERY hefty helping in! Similar to what you do with the diet tea :) And I also shake it up pretty vigorously.

 

And from July til just last couple weeks - NEVER slept through an alarm - before the Xyrem, well five alarms!!! And often slept through!!!

 

And I've gotten worse about eating closer to my dose and if I don't go to sleep I do get a heavy sorta icky feeling in my belly. Per other posts I'm actually considering trying a night or two off the Xyrem to see what affect that has - hard to believe as I felt Xyrem was my miracle - and hopefully is YOUR miracle!! :) Just need something to happen as man...back to horrible horrible exhaustion. Boo :(

 

Well Happy Holidays rght? :) (on a happier night hee hee)  Merry Christmas, Happy Hannakkuh and Good Kwanza, right? No don't nobody get offended over that. ;) Happy Thought for us All! :D



#17 browndog319

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Posted 28 December 2013 - 07:29 PM

Happy Holidays and Happy New Year to you! I have just had the WORST supervirus - no idea what it was - for the last 9 days. For about 6 days, I was dizzy, couldn't get out of bed, coughing, stomach issues, etc. Imagine feeling that lousy and it having NOTHING to do with Xyrem. I don't think I've ever gone this long without getting online... it's really weird to have been that sick!

 

Needless to say, I've been Xyrem-free for the last 9 days... since I have asthma and my lungs hurt, I didn't think it was a good idea to suppress my breathing (although sleeping was really bad with all the coughing, so it was tempting). So I have to get back to it, but I'm still coughing. I'm worried about doing it before my lungs are really clear - I take a controller medication for the asthma, I just don't want to risk anything.

 

That too close to bed eating feeling is the WORST!!! I don't miss it - I have to get used to this all over again! Ugh... I'm dreading it. But at least I'm feeling better. Hope you had a really good holiday  - I did, even though I was sick (I just had to sleep A LOT!)



#18 b.chrissie@yahoo.com

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Posted 06 January 2014 - 03:33 PM

browndog319: Sorry it took me so long to post this, but, I wanted to ask you about your flying dreams. Was it actually just you flying through the air? I ask because I used to have dreams like that all the time before I was diagnosed and started all the meds.



#19 browndog319

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Posted 14 January 2014 - 10:20 PM

b.chrissie - yes! The flying usually happens that I'll be walking down the street and then all of a sudden I'll just take a leap and be able to fly. It's pretty cool. OR once I actually believe I levitated off my bed... but I'm not sure if that was a hallucination or I actually did in retrospect. That was before I really understood my illness. But I also believe in things like meditation, mind reading, etc. so I believe that I could make myself levitate. But I only was able to do it once.







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