Jump to content


Photo

I Started Xyrem And I'M Ok, So Far.


  • Please log in to reply
8 replies to this topic

#1 Saraiah

Saraiah

    Member

  • Members
  • 382 posts
  • Gender:Female
  • Location:U.S.

Posted 22 July 2009 - 08:08 PM

Since most often we talk with each other about what's not going well, I thought I'd post that after night 1 of Xyrem, I'm fine. I was extremely anxious about the whole thing, since I take other drugs that are Central Nervous System depressants. I was afraid I'd stop breathing, or go into respiratory depression, or there would be a fire and I wouldn't wake up.... (I can worry about just about anything.) But I woke up easily to use the bathroom about 3 hours after the first (2.5 gram) dose, and woke easily in the morning. I've got an autoimmune - caused colitis, and that kicked in by this morning, and I'm so nauseated that I don't want to eat. But hey, if I had to choose between nausea and narcolepsy, I'd definitely go with the nausea. And of course, the nausea is supposed to go away (right?).

Anybody know a trick to make the nausea calm down in the meantime?

Any other Xyrem newbies out there? How's everybody doing?

Saraiah

#2 Mike M

Mike M

    Member

  • Members
  • 379 posts
  • Gender:Male
  • Location:Saint Paul, MN
  • Interests:Ultimate Frisbee, Literature, Film, Music, Narcolepsy, Education

Posted 22 July 2009 - 11:16 PM

And of course, the nausea is supposed to go away (right?).


Yes, for most it does, but for some it does not.

Anybody know a trick to make the nausea calm down in the meantime?


Saraiah,

It is hard to know since everyone tends to have a different level of "reaction." I would also guess that your colitis definitely plays a role in this. For many folks the nausea seems to be tied to the timing of your final food for the day. While Xyrem recommends that you stop eating two hours before the first dose, some people find that they need to stop three to five hours before their first dose. Also, I know at least one person who also stops drinking water or other liquids two hours before her first dose (she stops eating three hours before the dose). You might want to try varying when you stop your food and liquid intake to see if that helps the nausea. Good luck, regardless. I do hope that things continue to go well with the Xyrem. Cheers!

#3 artmore

artmore

    Member

  • Members
  • 2 posts
  • Gender:Female
  • Location:Tennessee
  • Interests:I love to read, and I like cycling, but I haven't done much of that in the past few years.

Posted 12 August 2009 - 05:53 PM

I just started on Xyrem about ten days ago, and I'm not sure what I think about it. The first two nights, I was out cold for exactly four hours. I took the second dose and woke up exactly four hours later, but since then every night has been different. I'm supposed to titrate up every week, but I think that's too fast, given what I've read on some of these posts. I did increase the dosage just slightly a couple of nights ago, and the headache came back yesterday. Today was ok as far as the headache goes, but I was upset about a work issue last night, and I hardly slept at all. I couldn't tell that I had taken anything--except for the moment when I realized that I HAD to go to the bathroom. That was an adventure.

#4 Saraiah

Saraiah

    Member

  • Members
  • 382 posts
  • Gender:Female
  • Location:U.S.

Posted 12 August 2009 - 09:05 PM

I just started on Xyrem about ten days ago, and I'm not sure what I think about it. The first two nights, I was out cold for exactly four hours. I took the second dose and woke up exactly four hours later, but since then every night has been different. I'm supposed to titrate up every week, but I think that's too fast, given what I've read on some of these posts. I did increase the dosage just slightly a couple of nights ago, and the headache came back yesterday. Today was ok as far as the headache goes, but I was upset about a work issue last night, and I hardly slept at all. I couldn't tell that I had taken anything--except for the moment when I realized that I HAD to go to the bathroom. That was an adventure.


Hi Artmore,

I've had a number of pre-existing conditions that got worse with the Xyrem, at least at first, and some are still ongoing... BUT, after 3 weeks on the Xyrem, I cannot tell you how much better I feel, how much more awake! It's really phenomenal! It is such a relief. So, I wanted to encourage you to stick with it through the first few bumpy weeks. Because at least for some of us, it turns out to be helpful.

One of the pre-existing conditions that got worse for me when I started the Xyrem was insomnia. I've found that when I discipline myself to go to bed at my normal time, and DEFINITELY don't eat for the two or more hours before taking the first Xyrem dose, I have the best luck falling asleep. I thought at first that they tell you not to eat because it might increase the likelihood that you feel nauseated, but I finally learned that it's because the food somehow absorbs the Xyrem, and it doesn't work as well.

Although I've had a tough time falling asleep with the first Xyrem dose, I'm always able to fall asleep with the second dose (taken 2 1/2 hours after the first, unless I'm actually asleep, and stay asleep longer than that). I called my sleep doc and told him what was going on, and he told me to take the doses somewhat closer together. So, at least now I get to sleep a bit earlier.

Most of the rotten side effects I've had have at least calmed down by now - I've been on Xyrem for 22 days so far. So I hope that your headaches calm down. You might try calling your doctor and describing the headaches and your sleep patterns. Who knows, your doc might surprise you and say something helpful. ;)

Good luck,

Saraiah

#5 napnow

napnow

    Member

  • Members
  • 23 posts
  • Gender:Female
  • Location:Lansdale, PA
  • Interests:I simply can't live without books!

Posted 13 August 2009 - 08:46 AM

Since most often we talk with each other about what's not going well, I thought I'd post that after night 1 of Xyrem, I'm fine. I was extremely anxious about the whole thing, since I take other drugs that are Central Nervous System depressants. I was afraid I'd stop breathing, or go into respiratory depression, or there would be a fire and I wouldn't wake up.... (I can worry about just about anything.) But I woke up easily to use the bathroom about 3 hours after the first (2.5 gram) dose, and woke easily in the morning. I've got an autoimmune - caused colitis, and that kicked in by this morning, and I'm so nauseated that I don't want to eat. But hey, if I had to choose between nausea and narcolepsy, I'd definitely go with the nausea. And of course, the nausea is supposed to go away (right?).

Anybody know a trick to make the nausea calm down in the meantime?

Any other Xyrem newbies out there? How's everybody doing?

Saraiah



Hi Saraiah! I am a Xyrem newbie too. I am doing pretty well, last night was my 6th night and I am supposed to go to the next dose on Friday night. I also have nausea with a general lack of appetite. I don't know if the nausea is causing the lack of appetite or if not eating enough or often enough is causing the nausea. I do not eat 2.5 to 3 hours before bed, which I find annoying because by then I am hungry! I also sometimes feel a little shaky, like my blood sugar is low. Again... is it due to the Xyrem or the lack of appetite? It is by no means horrible, just annoying. All I can do is trust that things will get better. I think that when I find "my" dose, and my body has time to adjust all will be really good. I already know that I need to up my Nuvigil. I think ginger, peppermint and chamomile are good for nausea. Get yourself some tea and try it. Good luck to you!

#6 callienotfornia

callienotfornia

    Member

  • Members
  • 8 posts

Posted 13 August 2009 - 02:29 PM

Sometimes I eat a couple of saltines before I get out of bed in the morning. It helps a bit with the nausea.

#7 Saraiah

Saraiah

    Member

  • Members
  • 382 posts
  • Gender:Female
  • Location:U.S.

Posted 13 August 2009 - 11:49 PM

Hi Saraiah! I am a Xyrem newbie too. I am doing pretty well, last night was my 6th night and I am supposed to go to the next dose on Friday night. I also have nausea with a general lack of appetite. I don't know if the nausea is causing the lack of appetite or if not eating enough or often enough is causing the nausea. I do not eat 2.5 to 3 hours before bed, which I find annoying because by then I am hungry! I also sometimes feel a little shaky, like my blood sugar is low. Again... is it due to the Xyrem or the lack of appetite? It is by no means horrible, just annoying. All I can do is trust that things will get better. I think that when I find "my" dose, and my body has time to adjust all will be really good. I already know that I need to up my Nuvigil. I think ginger, peppermint and chamomile are good for nausea. Get yourself some tea and try it. Good luck to you!



Hi Napnow,

I feel very lucky that by now, my nausea tends to be much more short-lived, and much less intense. Just fyi, if your nausea is causing you to really not eat enough (which mine certainly was for the first 10 days or so), you might want to talk with your doctor about a medication called Reglan. It's a prescription drug that (as I understand it) stimulates the stomach muscles to get going and digest food. I am told that it is a Central Nervous System depressant, which of course we're not supposed to take with Xyrem. But since my nausea over that first week and 1/2 or so was so intense that I literally could not eat, my doctor had me take 10mg of Reglan before each meal. For me that was effective in getting the food in and out of my stomach, and so relieving the nausea. My sleep doc told me that Xyrem does drastically decrease some people's appetite; and you and I both know that nausea can decrease the appetite. So, it may not be a question of one or the other making you want to avoid eating; it might be both together!

The Xyrem never made me feel shaky or like my blood sugar was too low, although I would not be surprised to hear that it did for other people. Have you tried writing down what you're eating all day, just to see whether your caloric intake is up around the roughly 2,000 calories that most adults need? That might give you a clue about whether it's the Xyrem or insufficient calories that is causing the shakiness.

Finally, I'm like you - not eating for 2-3 hours before bed sometimes leaves me very hungry, and that's counter-productive when I'm in bed and staring at the ceiling listening to my stomach growling. You may not have the luxury of doing this, but if you have time to stay in bed longer than 8 hours, here's an idea: I finally realized that if I needed to eat again before going to bed, I can just go to bed and set one alarm for 2 hours after my bedtime snack, and take the first Xyrem dose then. Then, obviously, I set a second a second alarm for 4 hours after dose 1, and take dose 2. The only caution is that the Xyrem information contains a warning stating that we shouldn't be driving until 6 hours following the last Xyrem dose.

Thanks for the tips on tea! I'm very happy that I don't need the tea right now, but I'll know what to do next time. I hope your nausea is getting at least a little better. Let us know how it goes.

Saraiah

#8 Irishhh

Irishhh

    Member

  • Members
  • 178 posts
  • Location:Kentucky, Yes, we wear shoes!

Posted 14 August 2009 - 07:29 AM

I'm glad it's working out for you so far, I hope it continues on this way! And also the nausea needs to go of course, but that might just take time.


My questions for everyone who is taking xyrem,: have you paid for it alone? do you have insurance? how much do they cover? I would really like to know b/c the biggest drawback for me has been money. I've been afraid I wont be able to pay for it... and what if I really like it and have to stop?

#9 Saraiah

Saraiah

    Member

  • Members
  • 382 posts
  • Gender:Female
  • Location:U.S.

Posted 01 September 2009 - 09:21 PM

Hi Irish,

I'm extremely fortunate that my insurance pays for the Xyrem with just a $25 copay. I've seen some people discuss having to pay $300-$400 copays, and I think the insurance executives of those insurance companies should be repeatedly forced to stay awake for days, until they fork over an equivalent percentage of their take home pay before being allowed to lay down in their beds. :angry:

I've seen some PWN discuss arranging something with JAZZ to get either free Xyrem or reduced cost Xyrem based upon lower incomes. And I also saw a piece of advice on the facebook Narcolepsy Network, where a fellow advised that a particular association of rare diseases could sometimes help pay for Xyrem. Irish, I wrote that particular piece of advice down on a piece of paper that I can't find at the moment. If you need the information, let me know, and I'll go look for it.

Saraiah