28 replies to this topic

[smg08009]

So after two weeks of phone calls with my doctors, SDS, and a patient connect mentor, I got my first shipment of xyrem. My sister is starting too, so she's coming home from college for the night for a sort of narcoleptic slumber party We have raspberry crystal light, goodnights (like pull-ups...but for 12 year olds...we're both pretty small), and we'll be spending the night in my mom's room with the door either closed or closed & locked (to prevent sleep walking and assure us that if someone's in the room they're not real lol)...and we'll have wastepaper baskets next to the bed just in case it upsets our stomachs.

Like I've said previously, I am absolutely terrified of throwing up. I asked the xyrem nurse and the mentor if they had any advice on how to avoid this side effect and they both had pretty much nothing. I'll be done eating 4 hours before I take the medicine, and I might dilute it more than they recommend. I'm not taking any other medication, except 10 mg IR ritalin (but that was at 7 a.m. so it's already long gone from my system)

Any advice on how to avoid vomiting? Or any advice to avoid a scary night? Or even nausea remedies for tomorrow? I usually drink a tsp of baking soda in water for an upset tummy, but the sodium's probably going to be a no-no.

Thank you!!!!

[bingisking]

The best advice for not vomiting is to stay laying down as soon as you take it and not get up for anything or even sit up for that matter unless you ABSOLUTELY HAVE TO! The vertigo is usually what makes me sick. Other than that, I got nothing :/ Good luck to you!

[N50+]

Best advice - relax. Read a bit, do some yoga, whatever you do to relax. Don't watch TV and don't use your computer - those things keep you up. When you feel ready for bed, get ready, get in bed, take your xyrem, lay down and enjoy a fine night of blissful sleep.

[Hank]

I hope you both have a good night. I was relieved to have none of those side effects. Whatever your experience with Xyrem, it is great that you will share it as sisters. I think of Margaritas or the ocean before I take Xyrem to prepare myself for the salty taste. It is salty but a lot of good things are salty. Salty does not have to mean bad. Do listen to the words of the previous replies - relax. Turn off the light, stop chatting, take you dose and just relax. I noticed a marked difference in sleep quality and daytime clarity in week 3. My body just needed the time to begin resetting itself. I have grown accustomed to fighting the strong pull of sleep during the day. Then at night, I would read, watch tv or use the computer until I just fell asleep. Those habits did not serve me well and I have changed them. I read or net surfed after taking it and waited for it to kick in. Then I reflexively struggled against the strong pull into sleep with Xyrem, since sleep is only that enticing during the day for me. Once I decided to follow the advice of others, it worked more smoothly. Have a fun night with your sister and toast your future with your medicine cups. My wife and I call it my Xy-garita or Xy-tini - straight up.

[tdmom]

Um, relax a little bit. A lot of people don't have these side effects, many people have NONE of them. The chances of you having all of them in 1 night is so far out there. Don't be so anxious it becomes a self fulfilling prophecy. Many people do well on it. My son has been on it for 11 months. He had nausea but not the first night and it went away. Fewer people vomit then suffer from nausea.

So after two weeks of phone calls with my doctors, SDS, and a patient connect mentor, I got my first shipment of xyrem. My sister is starting too, so she's coming home from college for the night for a sort of narcoleptic slumber party We have raspberry crystal light, goodnights (like pull-ups...but for 12 year olds...we're both pretty small), and we'll be spending the night in my mom's room with the door either closed or closed & locked (to prevent sleep walking and assure us that if someone's in the room they're not real lol)...and we'll have wastepaper baskets next to the bed just in case it upsets our stomachs.

Like I've said previously, I am absolutely terrified of throwing up. I asked the xyrem nurse and the mentor if they had any advice on how to avoid this side effect and they both had pretty much nothing. I'll be done eating 4 hours before I take the medicine, and I might dilute it more than they recommend. I'm not taking any other medication, except 10 mg IR ritalin (but that was at 7 a.m. so it's already long gone from my system)

Any advice on how to avoid vomiting? Or any advice to avoid a scary night? Or even nausea remedies for tomorrow? I usually drink a tsp of baking soda in water for an upset tummy, but the sodium's probably going to be a no-no.

Thank you!!!!

[sleepylune]

My advice if you have a narc slumber party: don't stay up chatting! The first night I took it, I was up for awhile chatting with my boyfriend. The urge to fight sleep was so strong in me that it took me awhile to stop fighting the sleep. I also wore depends, but I have actually never wet the bed. Unfortunately, I did vomit quite a few times until I found my perfect dose. It didn't happen the first night, but it happened every time I titrated up. If you have any sensitivity, titrate slowly. And I mean slowly, like just a tiny bit each night until you reach the dose. Something else I tried was eating a couple of saltine crackers before bed. Most important is to relax! Just let the xyrem work and don't fight it. Everything will be ok!

[Megssosleepy]

how did it go? Everything turn out okay?

[smg08009]

Thank you everyone for your replies. They were really helpful, and it's comforting to know that there are others out there who have been through the same thing. I reread my post from yesterday and realized I sounded like a crazy person. It was a weird night. My sister took the plunge first. I decided I was going to do a few minutes of deep breathing exercises to relax...and ended up falling asleep. My sister seems to have slept fine, no side effects but she woke up about an hour after the second dose repeating over and over that she needed to use the bathroom. I tried to help her, but felt a C attack coming on and had to lie down and call my mom. It kinda scared me that she was so out of it, but she was very giggly and seemed fine. This morning she says she remembers everything, but doesn't feel like she slept any better than usual. I'm going to try again tonight.

[Megssosleepy]

Thank you everyone for your replies. They were really helpful, and it's comforting to know that there are others out there who have been through the same thing. I reread my post from yesterday and realized I sounded like a crazy person. It was a weird night. My sister took the plunge first. I decided I was going to do a few minutes of deep breathing exercises to relax...and ended up falling asleep. My sister seems to have slept fine, no side effects but she woke up about an hour after the second dose repeating over and over that she needed to use the bathroom. I tried to help her, but felt a C attack coming on and had to lie down and call my mom. It kinda scared me that she was so out of it, but she was very giggly and seemed fine. This morning she says she remembers everything, but doesn't feel like she slept any better than usual. I'm going to try again tonight.

That stuff makes me need to Pee as well!! annoying, you two are on such a low dose that's why it doesnt last very long. I am up to 3.75 (I only weigh 100lbs wet )and am now sleep about 3 1/2 hours each dose. Even at this dose I get up and use the bathroom if I need realllllly need to. I have had to start drinking lots of water when I get up, I am so dehydrated from the stuff, had some GI troubles, but nothing to to terrible. The process of going up doses is really long and crappy, but I know once Im there its going to be GREAT!!!

[sleepylune]

I always get up to use the bathroom before taking my second dose and I'm always really glad I did! I found my dose and am feeling pretty great, so you will get there too!

[sleepywriter]

The first night, I was so worrying about peeing the bed that I totally MADE myself have to get up and use the bathroom. It's a mental thing. Maybe that's what happened to your sister as well? I will say that I do legitimately have to get up to pee when the alarm goes off for my second dose; probably due to the high sodium content. Start increasing the amount of water you drink now, and be sure to watch your sodium intake in the foods you eat as well as the potassium. You want the sodium and the potassium amounts to be as close to each other as possible from what I've read.

You two may not sleep any better for a few weeks until you get up to a higher dose. Even then, it takes a long time to notice a major impact in EDS. I noticed a reduction in cataplexy way before I noticed relying less on stimulants during the day to stay awake. You've got a huge sleep debt to pay off after all.

I went on Xyrem in May and had to go off for a week in June due to being sick. I've since started up again and have been back on it for two months. I do still have some nausea and loss of appetite in the mornings, but that's the only lingering side-effects. Just adjust your doses slowly and you'll be fine. Feel free to ask as many questions as you need to along the way, whether it's here or your Xyrem Success Program nurse. My nurse was super awesome in helping me determine the best possible dosing strategy for me. I'm on 3.75gr and 2.75gr as of now. Adjusting the first dose until I was able to sleep until the alarm and THEN adjusting the second dose seems to have really helped reduce the side-effects for me.

[purpley]

Any advice on how to avoid vomiting? Or any advice to avoid a scary night? Or even nausea remedies for tomorrow? I usually drink a tsp of baking soda in water for an upset tummy, but the sodium's probably going to be a no-no.

Thank you!!!!

I've never taken Xyrem but the best natural remedy for nausea (awesome for nausea in pregnancy) is ginger. The real stuff, not "ginger ale," which is usually artificial. Try ginger beer -- it's a root beer, non-alcoholic -- or real ginger tea. If you can stand it, try candied ginger -- it's a strong taste but it works. I don't recommend peppermint for nausea. It can help settle the stomach if you tend to get an upset stomach easily, but eating or drinking too much of it relaxes the sphincter between the esophagus and stomach, which can cause reflux. Not what you want if you're worrying about vomiting.

Can't someone make "designer" Xyrem without all the side effects?

[SleepyRaffie]

I am on 3.75g X2 right now and I take the first dose at 10pm. I get up almost every night around 12:30 to go to the bathroom, but I do wake up and am able to get there without a problem. I go before I take my second dose and do not need to get up again. I have really not had any bad side effects at all. My cataplexy has been significantly reduced and I have had some decent days so I am really hopeful.

Oh and you do not sound crazy. You could ask my husband about how nervous I was before taking my first dose and I am sure he would tell you. Hehe. It was really uneventful in the end.

[Megssosleepy]

I'm on 3.75gr and 2.75gr as of now. Adjusting the first dose until I was able to sleep until the alarm and THEN adjusting the second dose seems to have really helped reduce the side-effects for me.

I was thinking of doing the same thing but the opposite... I go to bed at 10 and wake around 1:00am (pee break) then the second dose... for some reason the second dose never keeps me asleep long, so I was thinking a smaller dose at first then at 1 take the full dose! This medicine is crazy, I feel like a science experiment... but even though its crazy its also predictable and I like that! I think now that I can do 3.75x2 I will try to figure out the the right dosage... I heard that 3 small doses work well as well?

[Hank]

I have read comments about 3 small doses but I have some concerns about that. If anyone can shed light on this I am interested. As I understand it, the purpose of Xyrem is not to lengthen sleep. The purpose is to achieve deep restorative sleep- Stage 3. A smaller dose, like the starting dose of 2.25 is less predictable because it isn't enough to do much good. I am concerned that 3 small doses would give me a long night or poor quality sleep. For the time being, my doc has me on a sleep medication in addition to Xyrem to lengthen my sleep while I titrate up on the dose of Xyrem. If anyone can explain these finer points, I would love to learn from you.

[tdmom]

I have heard 2 diffeent things about the 3x night Xyrem. It was talked about at a big sleep conference in Boston last year apparently. At Stanford they use the 3x night dosing for people who wake too soon and cannot get a full night sleep. They take the total nightly dose and divide it in 3 instead of 2. It has a very short half life.
Then my son"s Dr wants him on the 3x nightly dosing as he feels since he is still a teen that he needs to sleep at least 9 hours a night; with the half life of Xyrem so short he won't be able to do that without 3 doses. He feels that when he is older he can switch to 2x a night dosing. Doesn't quite answer our questions but thats what I know so far.

I have read comments about 3 small doses but I have some concerns about that. If anyone can shed light on this I am interested. As I understand it, the purpose of Xyrem is not to lengthen sleep. The purpose is to achieve deep restorative sleep- Stage 3. A smaller dose, like the starting dose of 2.25 is less predictable because it isn't enough to do much good. I am concerned that 3 small doses would give me a long night or poor quality sleep. For the time being, my doc has me on a sleep medication in addition to Xyrem to lengthen my sleep while I titrate up on the dose of Xyrem. If anyone can explain these finer points, I would love to learn from you.

[tdmom]

Xyrem really shouldn't be titrated nightly. Its best to give each dose a week before changing the dose.

My advice if you have a narc slumber party: don't stay up chatting! The first night I took it, I was up for awhile chatting with my boyfriend. The urge to fight sleep was so strong in me that it took me awhile to stop fighting the sleep. I also wore depends, but I have actually never wet the bed. Unfortunately, I did vomit quite a few times until I found my perfect dose. It didn't happen the first night, but it happened every time I titrated up. If you have any sensitivity, titrate slowly. And I mean slowly, like just a tiny bit each night until you reach the dose. Something else I tried was eating a couple of saltine crackers before bed. Most important is to relax! Just let the xyrem work and don't fight it. Everything will be ok!

[Megssosleepy]

Xyrem really shouldn't be titrated nightly. Its best to give each dose a week before changing the dose.

Ive waited until the slight side effects wore off before tirating, So I went up about every 7-10 days... I think it may have been a bit to fast, so I will prolly stay where I am a bit longer this time.

[SleepyRaffie]

I waited two weeks before titrating to 3g 2X and three more weeks before 3.75g 2X. My doctor is very cautious and so far my experience has been pretty good.

[sleepylune]

Xyrem really shouldn't be titrated nightly. Its best to give each dose a week before changing the dose.

I didn't mean that I titrated from 3.0 to 3.75 to 4.5 each night. I meant moving up .10 a night from 3.0 to 3.75. It ends up taking about a week, then stay at that dose. Titrating slowly is the only thing that kept me from vomiting in the middle of the night. Sorry I didn't clarify, I definitely don't want anyone trying to titrate too quickly from my misleading comment!