8 replies to this topic

[sleepylune]

I've had a pretty interesting road on Xyrem so far. I have always been sensitive to new medications and I had a feeling I would be experiencing side effects with the xyrem for sure, but I was not prepared for just how many. Starting on 2.5 x2 was ok, still sleepy the next day but no side effects really other than some mild headaches and some nausea. Titrated up to 3.0 x2 and woke up about an hour after taking the second dose and began to vomit profusely, passing out in the bathroom, my boyfriend holding my hair back. Did 3.0 x1 for a few days and then tried 3.0 x2 again, with some diarrhea in the morning. Unpleasant, but not unbearable. Stayed at the 3.0 x2 for about two weeks and started to notice that I felt bloated, nauseous, no appetite, and shaky. Dr. suggested this may be because I needed to up the dose as many people have reported that if they are not on their right dose, they experience more side effects. So we titrated up to 3.75 x2. Yet again, about an hour after the second dose I started to sweat profusely, rolling around in bed trying to wake myself up because I knew what was coming...and yet again, I began to vomit profusely. It was awful. I was so tired I thought I would fall asleep in the toilet bowl, but couldn't stop throwing up. I eventually fell back to sleep on the bathroom floor, but my boyfriend stayed up all night watching me to make sure I didn't throw up in my sleep. Dr and I decided to take 3.75 for the first dose and stay at 3.0 for the second dose. I have been feeling much more alert during the day with almost no nausea and my appetite is almost back to normal. However, now I am noticing that in the morning I am extremely shaky. I feel as though my heart is racing, but when I put my hand on my chest my heart beat seems normal. It is not the same feeling as anxiety (which I know well) and the shakiness is more annoying that uncomfortable. I can still go through my day, but I keep dropping things. I have tried eating first thing in the morning, which seems to help, but does not diminish the shakiness completely. I had an idea yesterday which made me SO happy! I thought to myself, what if I'm shaky because for the first time in years I am sleeping so well that I don't need to take as high of a dose of stimulant in the morning (I take Concerta 36mg ER). The idea that maybe I could take less stimulants made me so happy to be shaky. Alas, I tried this morning to take one of my Ritalin 10mg instead and am still shaky. Has anyone else had this shaky side effect? I have read on some other forums that some magnesium, calcium, potassium vitamins might help.

Both my dr and xyrem nurse are impressed that I am still trying the xyrem with this many side effects. After I threw up the first time my dr said "well, we gave it a try" and was a little surprised I wanted to continue. Truth is, I have no other options but for this to work. I am about to start grad school and I really, really want this xyrem to work. If anyone has had any similar experiences I would love to hear about it and what, if anything, helped.

[N50+]

Well, my experience in getting to the shaking was quite different from yours. It took about 5 or 6 months and
then it happened pretty fast.
No nausea or diarrhea but bladder control became anyone's guess, had loud ringing in ears, depression
( like the falling off a cliff kind) and finally cames the shakes. Within a matter of just a couple days my hands
were shaking so bad it was embarrassing to hand a cup of coffee to someone and forget holding my own cup
without both hands firmly gripping and concentrating. Then the shaking spread to my upper body, arms, shoulders, neck.
Taken all together was a bit scary and I didn't consider it could be the xyrem at first. Within two weeks time I was
barely able to function and get through a day. When I finally went back to my sleep doctor, I could see on his face
that he could see at a glance what I was going through. It was a short visit - no more xyrem and you need to
stay home from work or the next 5 days. Then he gave me Xanax to settle me down a bit.
There were other dark sides of xyrem which I largely ignored as it was the most awake I'd felt since I can't remember when.
So now I do the ritalin thing 4 or 5 times a day. That ain't no picnic either but at least at this point seems to do what it is
supposed to without any ridiculous or incapacitating side effects. I think I was a lot happier before the dx (except or the
crashing cars thing and always feeling on the ragged edge of slumber.)
One thing that does bother though and not sure if it's the N, the meds, my age or what but I just don't seem to care much
about things anymore.
Sure wish they'd hurry that research along a bit!!!

[Megssosleepy]

edge of slumber.)
One thing that does bother though and not sure if it's the N, the meds, my age or what but I just don't seem to care much
about things anymore.
Sure wish they'd hurry that research along a bit!!!

Could not agree more! I think its the meds... cuz ive been on the depressed side since my teens but could still manage... but now all i think about is my bed... I was an OCD neat freak now I really dont care! I HATE THIS!!

[ImSleepin]

When I started Xyrem, I actually titrated my medication more slowly as I was also sensitive to it and that actually helped significantly with the nausea and GI issues I experienced. I started at 1.5 x 2 for one month then I did 1.5 and 2.25 for about 2 weeks before doing 2.25 x 2 for two to three weeks. I called my doctor and let him know that I was just upping one dose at a time, which he said was fine and it helped so much with the sweats, nausea, and GI problems. I ended up doing this for all my doses until I got to 4.5 x 2. If you can make it through the titration process, it'll be worth it in my opinion. It's made a huge difference for me over time and I'm much better off now than I was before treatment.

The only time I feel really shaky is if I fall asleep too early and don't eat for a long time before bed. If my stomach is empty then I do wake up feeling shaky and sick. Could the dose of Concerta be too high? Have you tried going without the Ritalin and Concerta on a day you don't have anything you need to do? Also, do you eat anything in the morning? If not, maybe try eating something small before taking the Ritalin to see if it helps.

[sleepylune]

N50+ I'm so sorry that you had that experience. The shakiness is starting to fade away, much milder now and getting better every day I tweak my routine. I hope that I can stay with the xyrem and hopefully decrease the ritalin, I'm taking it 3 times a day now and if I have to take more I might explode.

Imsleepin I am trying to titrate more slowly as well. I eat dinner 3 hours before I take the xyrem, and have a few crackers before my first dose. I wake up and take the concerta and fall back to sleep for 30 minutes and then I really wake up. I go downstairs and make breakfast and then I shower and get dressed. It's been working pretty well. I've been taking less ritalin on days that I don't have to work, but still feeling sleepy on those days.

[Megssosleepy]

Can you describe shaky? I had to up my dose 2 nights ago, because the 2.25x2 wasnt keeping me a sleep, I was trying to paint my nails last night and was shaking like a leaf and when walking down stair my legs are really shaky... Do you think that is from the Xyrem? I didnt really think anything of the legs because Ive been stressed and my C happens to make my legs tremble so Ive just been thinking it was that.

And you said if it is the Xyrem it will fade with time?

[sleepylune]

Can you describe shaky? I had to up my dose 2 nights ago, because the 2.25x2 wasnt keeping me a sleep, I was trying to paint my nails last night and was shaking like a leaf and when walking down stair my legs are really shaky... Do you think that is from the Xyrem? I didnt really think anything of the legs because Ive been stressed and my C happens to make my legs tremble so Ive just been thinking it was that.

And you said if it is the Xyrem it will fade with time?

I'm still trying to figure it out myself. Shakiness went away for a couple of days but it's back today. Today it feels like I took too much Concerta. By shaky I mean when you put your hand out in front of you and it doesn't stay still, like the shaky that you feel when you haven't eaten and your blood sugar is low. I don't have C so I don't know if yours could be related to that. I am just trying to take it one day at a time with this and monitor the shakiness. I am still really hoping that it's too much concerta, and I see my doc on thursday so maybe we can get a lower dose for the am and give that a try.

[Hank]

I am a bit shaky right now and just read your posts, so your comments are helpful. I am on Xyrem for 3 weeks now- 2 weeks 2.25x2 and 1 week so far on 3.0x2. I am very pleased overall, but I am having 2 types of shaky. I have a fine motor shaky that is really only a problem when using the key pad on my work iphone. I am making so many typos on emails that I am ordering a wireless keyboard so I don't fall behind with replies. The other shaky I think/hope is C improving and shaky/slightly trembly is all that remains- I am hopeful that is it. I have noticed minor C has reduced a lot, so I haven't felt waves of tingles up my legs and arms lately. So I hope this shaky stuff is just C fizzling out- I only know what it is like to live with this and always thought it was normal, so normal (ie no/less C) is uncharted territory for me. I am interested to know how you all continue and hope you feel better/well soon. It seems we are in the same boat and I am glad to be in such good company.

[Megssosleepy]

I talked to my nurse about everything that's going on last night. She said to talk to our DRs about the "shakes" Said our electrolytes may not be balanced. Also, she said that if we experience any scary/morbid dreams to document it with them. I really like my Xyrem nurse she is really understanding and very helpful!!