24 replies to this topic

[austeenob]

Everyone post you times of doses and MG's of each dose, and how you feel and do the next day!!

i'm taking 4.0 at 11:30 and sleeping till 3:30 and waking up and taking my second 4.0 dose and going back to sleep (not near as quickly sometimes) and waking up at about 6:50-7:20 and usually when i wake up i still have some yawns, still have body fatigue tiredness feelings. I've been expriementing with xyrem for 2 months now, i usually take it between 11 & 12 and usually eat 3 hours before i take it. when will i start to feel better?? Im TRYING to be consistent with the doses, but its just everymorning i still have the slight urge just nap a little longer if not, im up eating breakfest and and hour and a half later i feel like crap. Once i take the little aftermorning nap, i feel so good. But why is it right after i sleep at night i dont feel like i do after that nap. Its more body fatigue then actual tiredness.

Do i need more time? More cosistency? Is it typical at the start to feel like crap and eventually it is really what the body needs and just keep going with it? go to 4.5 again? spilling over? just any tips and directions you suggest ill do, email me at austeenob@aol.com, i respond better there, THANK YOU!!!!!!!

[tdmom]

I do not have N, my 17 year old son does. My son was diagnosed 2 years ago in November, and he has been on Xyrem almost a year. He has had many of the side effects yet it does make him feel better overall. I have been an RN for 28 years.My son with N is my 3rd child. These are relevant just to show I have lots of experiencing observing things, medical things especially.
With all that said I have a couple of comments/observations that I hope will help you.
First I will have to say you are not allowing yourself enough sleep time. My sons neurologist wanted him to sleep 9 full hours because he said teens need more then adults. When we finally pushed it to the 9 hours his grades went up as did his SATs. Looking at your schedule (and assuming you are an adult and should aim for 8 hours) you are getting maybe 7 hours. I would absolutely push it so that you are getting a full 8 hours. That will mean trying to aim for 10pm. If you do that, 2nd dose at 2pm, say back to sleep at 2:20-2:30 and up at 6:50 I bet you will find that you are not so tired, and you will not have the urge to nap every morning. I am not a Narcoleptic and I would need more sleep then you are getting on a daily basis.
Consistency also seems to be essential for narcoleptic's energy. Every time we do something involving him being up later then usual he pays for it the next day. In the summer we did let him shift his schedule and as long as it was consistent he did okay.
I do not know how long you have had Narcolepsy but you probably have a big sleep debt. I bet if you give this a try- minimum 8 hours (so allow yourself 9 hours to include taking the Xyrem and fall asleep twice)for another 6-8 weeks I think you will start to feel better.
Lastly I wouldn't "experiment" to much too often with Xyrem. You won't know what dose you need if you are constantly changing it. 4 twice a night is a good dose. I would stick with that for several weeks before changing it. Once again consistency is key to fining the right cose. I keep the Xyrem bottle in the box with a small notebook and a small pencil (you know the small ones like at the miniature golf course) and write down what my son takes every night. We had to cut back for a while and are now titrating back up. AS I work 12 hour shifts this way my husband I have no questions about what dose or how long he has been on it if I am not there.
I know its discouraging to not get instant results. Its what people have come to expect of everything. But you won't get it with Xyrem. You might get feeling better though with time and patience.
I will copy and paste this into an email but I am leaving it on the board so others can see my response.
Best of luck!

Everyone post you times of doses and MG's of each dose, and how you feel and do the next day!!

i'm taking 4.0 at 11:30 and sleeping till 3:30 and waking up and taking my second 4.0 dose and going back to sleep (not near as quickly sometimes) and waking up at about 6:50-7:20 and usually when i wake up i still have some yawns, still have body fatigue tiredness feelings. I've been expriementing with xyrem for 2 months now, i usually take it between 11 & 12 and usually eat 3 hours before i take it. when will i start to feel better?? Im TRYING to be consistent with the doses, but its just everymorning i still have the slight urge just nap a little longer if not, im up eating breakfest and and hour and a half later i feel like crap. Once i take the little aftermorning nap, i feel so good. But why is it right after i sleep at night i dont feel like i do after that nap. Its more body fatigue then actual tiredness.

Do i need more time? More cosistency? Is it typical at the start to feel like crap and eventually it is really what the body needs and just keep going with it? go to 4.5 again? spilling over? just any tips and directions you suggest ill do, email me at austeenob@aol.com, i respond better there, THANK YOU!!!!!!!

[Hank]

Everyone post you times of doses and MG's of each dose, and how you feel and do the next day!!

i'm taking 4.0 at 11:30 and sleeping till 3:30 and waking up and taking my second 4.0 dose and going back to sleep (not near as quickly sometimes) and waking up at about 6:50-7:20 and usually when i wake up i still have some yawns, still have body fatigue tiredness feelings. I've been expriementing with xyrem for 2 months now, i usually take it between 11 & 12 and usually eat 3 hours before i take it. when will i start to feel better?? Im TRYING to be consistent with the doses, but its just everymorning i still have the slight urge just nap a little longer if not, im up eating breakfest and and hour and a half later i feel like crap. Once i take the little aftermorning nap, i feel so good. But why is it right after i sleep at night i dont feel like i do after that nap. Its more body fatigue then actual tiredness.

Do i need more time? More cosistency? Is it typical at the start to feel like crap and eventually it is really what the body needs and just keep going with it? go to 4.5 again? spilling over? just any tips and directions you suggest ill do, email me at austeenob@aol.com, i respond better there, THANK YOU!!!!!!!

First 2 weeks: Dose 1 at 10:30pm 2.25g Dose 2 at 2:00 am 2.25g Awake at/before 6:30 am
no food 2 hours before Dose 1. Moved to 3 hours improved nights.
Results: Night time was a coin toss, Daytime improved slightly

Second 2 weeks: Dose 1 at 10:oo pm 2.75g Dose 2 at 2:00 am Awake at/before 6:30 am
Results: Night time somewhat better and diminished over time

Third 8 weeks: Dose 1 at 10:15 pm 3.75g Dose 2 at 1:15 am Awake to alarm at 6:15, not before.
Results: Night time better until the last week. Daytime significantly improved to the best and most consistently awake I have ever felt so far.

This past week: Dose 1 at 10:15 pm 4.5g Dose 2 at 1:15 am Awake to alarm at 6:15, not before.
Results: Night time uneventful. Asleep within 30 min. Asleep straight through until I wake up for 2nd dose. Then asleep until morning alarm. Daytimes are the best I have ever experienced. I don't know how that compares to others, but I cannot imagine feeling this well- how did I live like that for so many years. But I did live like that and have enjoyed my life. I will enjoy my future more- I feel certain of that.


I hope you start receiving some relief. Please follow the recommendations of the previous post. She is a nurse and a mother. I think her recommendations, experience and intent are spot-on.

[Stephanie(:]

Everyone post you times of doses and MG's of each dose, and how you feel and do the next day!!

i'm taking 4.0 at 11:30 and sleeping till 3:30 and waking up and taking my second 4.0 dose and going back to sleep (not near as quickly sometimes) and waking up at about 6:50-7:20 and usually when i wake up i still have some yawns, still have body fatigue tiredness feelings. I've been expriementing with xyrem for 2 months now, i usually take it between 11 & 12 and usually eat 3 hours before i take it. when will i start to feel better?? Im TRYING to be consistent with the doses, but its just everymorning i still have the slight urge just nap a little longer if not, im up eating breakfest and and hour and a half later i feel like crap. Once i take the little aftermorning nap, i feel so good. But why is it right after i sleep at night i dont feel like i do after that nap. Its more body fatigue then actual tiredness.

Do i need more time? More cosistency? Is it typical at the start to feel like crap and eventually it is really what the body needs and just keep going with it? go to 4.5 again? spilling over? just any tips and directions you suggest ill do, email me at austeenob@aol.com, i respond better there, THANK YOU!!!!!!!

I have actually been on it for a long time and it works amazing. I take 3.0 on each dose though. It also helps if you go to sleep earlier then 12. It takes awhile before the sick feeling goes away. I actually lost 20 pds from it. Then after like two or three months it went away. And i usually ate like an hour before and it felt better on the stomach. Going to sleep with a completely empty stomach and taking the medicine hurt. But that will slowly go away.

[Megssosleepy]

I have actually been on it for a long time and it works amazing. I take 3.0 on each dose though. It also helps if you go to sleep earlier then 12. It takes awhile before the sick feeling goes away. I actually lost 20 pds from it. Then after like two or three months it went away. And i usually ate like an hour before and it felt better on the stomach. Going to sleep with a completely empty stomach and taking the medicine hurt. But that will slowly go away.

How long do you normally sleep with only taking 3.0x2? You eat an hour before bed? I would like to have food in my stomach when I go to bed, but if I do the effect of Xyrem doesn't last as long. Did you get your apatite back after a few months?

[DeathRabbit]

How long do you normally sleep with only taking 3.0x2? You eat an hour before bed? I would like to have food in my stomach when I go to bed, but if I do the effect of Xyrem doesn't last as long. Did you get your apatite back after a few months?

Hmm, all this is reminding me, I need to ask the doc if my Gilbert's syndrome will cause problems with Xyrem. Gilbert's is normally harmless, but it does cause issues in metabolizing certain medications.

[Megssosleepy]

Hmm, all this is reminding me, I need to ask the doc if my Gilbert's syndrome will cause problems with Xyrem. Gilbert's is normally harmless, but it does cause issues in metabolizing certain medications.

Do they metabolize faster or slower? I would say you may be a good candidate for 3 doses a night if its fast, and staying at a lower dose if it slower.

[Hank]

Do they metabolize faster or slower? I would say you may be a good candidate for 3 doses a night if its fast, and staying at a lower dose if it slower.

From what I understand Xyrem metabolizes at the same rate regardless of the dose. Also regardless of body mass. And we need 6 hours from the last dose before it is safe to drive.

I have been trying to find information about 3 doses per night. First of all, Xyrem is only licensed for 2 doses per night. I have found some references to 3 doses in some children but no details. It seems to infer that children need a longer period of sleep each night because their bodies are growing.

But I have found no peer reviewed (medical journal) studies on 3 doses.

My biggest concern about 3 small doses is that it would result in a long duration of lower quality sleep. I would be very happy with the fewest necessary hours of sleep with the highest quality I can achieve. Since the larger dose (like 9g/ 4.5g x2) achieves the highest quality deep sleep in the shortest period, that has been my goal. That is what I am on now and I am pleased with the results. If I can reduce that in the future, then I will be glad to reduce it.

The recommended timing for dose 2 is 2.5- 4 hours after dose 1. I have been going with 2.5 hrs. and that has worked better for me during the week.

I have always slept 7.5- 8 hrs per night. I never knew until my first PSG 5+ years ago that my sleep was so fragmented and inefficient. I had to wrap my head around the idea that duration of sleep and quality of sleep are 2 different matters. We need a balance of the right quality for the right duration to gain the full benefits of sleep.

I had been incorrectly diagnosed and treated with a medication that further decreased the qulaity of my sleep, but it did increase the duration. So, my neurologist kept telling me I was getting better. But the only definition of "better" was sleep duration- I did not see any results of being better, I was feeling worse.

When I went to a sleep medicine specialist, she essentially said he was wrong (actually she almost fell off her chair). So, I have learned the hard way that duration of sleep is a cheap substitute for quality. I feel plain stupid for believing a wrong diagnosis and taking a medication that stole so much from me (I'll stop there....dont't get me started!) My second PSG/ first MSLT clearly showed that decreased quality from the wrong medication. My third PSG/ 2nd MSLT (without that medication) finally showed my true baseline- and my diagnosis was made.

I will continue to evaluate my doctor, seek second opinions when I need, and educate myself on these things that I never knew. I suffered for not knowing, and I trusted a doctor who didn't know either.

Right now- the literature, the dose/schedule, and the direction of my doctor- all line up.

[DeathRabbit]

Do they metabolize faster or slower? I would say you may be a good candidate for 3 doses a night if its fast, and staying at a lower dose if it slower.

It causes them to metabolize a lot slower. I'm supposed to be careful with Tylenol, for instance. It really just depends on what liver enzyme is used in breaking it down. I'm nowhere near educated or clear-headed enough to be able to look at the chemical structure of Xyrem and make a judgment.

[Hank]

Yikes- I just read that previous post I wrote. I completely hi-jacked the conversation about metabolizing- so sorry. I was wondering if I would need to lower the dose on Adderall as Xyrem started working- I think the answer might be yes. I seem to have been "speeding" when I wrote that.

[DeathRabbit]

Yikes- I just read that previous post I wrote. I completely hi-jacked the conversation about metabolizing- so sorry. I was wondering if I would need to lower the dose on Adderall as Xyrem started working- I think the answer might be yes. I seem to have been "speeding" when I wrote that.

It happens. For some reason yesterday, I couldn't shut up about the development of supercomputing, haha

[Megssosleepy]

So I tried 3x 3.0 on Friday... nooooo good, I enjoyed being able to sleep in... but couldn't kick the groggy yuck feeling till idk 5:00PM!!!!! I experimented Sat/Sun night with only taking 1 dose of 4.5 at 1:30, I don't feel so bad today, and needed my alarm to wake me. I am going to try the same dose but taking it a lil earlier (very hard to wake up!) I did get a ton of REM sleep tho, vivid as all, and very confusing! I am going to try the one dose for the rest of the week and see if it helps. The side effects have been getting annoying (shakes, sweats, stomachache, and no appetite)At the one dose I felt pretty okay this morning... I did have to eat an apple while driving to work to stay awake but hey, I do what I gotta do!

I tried to keep my dose low but was only getting an average of 2-2.5 hours on each at 3.75x2, and my EDS was overwhelming! (last week was so very bad)

I do want to note, that before being treated around 12:00/1:00 I used to wake up constantly, many times with scary SP with HH. This is why I am trying the one high dose around that time. I normally do not have trouble falling asleep! I also have found out that Xyrem does not help with sleep lengthy, so I am afraid if I up my dose to 4.5x2 I will feel very ill and still not get the 7+ I crave... Lets face it I love to sleep!!

I am not suggesting that anyone else experiment... I prolly shouldn't be myself. If any one else has had sucess with one dose I would love to hear about it! Also the one dose has to be the second half of the night for me... when that stuff wears off I CAN NOT GO BACK TO SLEEP! (until its completely out of my system, then I crash)

And my final side note... taking only the last dose means I can eat and have a glass of wine with dinner if I prefer! So if it does keep my C at bay and helps with the EDS I will be very happy!

[Hank]

Megs- when I was sleeping that poorly on the 3.75 x2 dose, I called my sleep doc and made a strong request for them to squeeze me in. I got in the next day. She moved me up to 4.5 x2 and it has been smooth sailing. I am really sketchy about the idea of experimenting, but I know you are frustrated and looking for some benefit.

Here are some thoughts:
Xyrem is not the only medication you are on. You also take Fluoxetine and Adderall.
Is your doc looking at the interaction of those 3 medications? If not, maybe time for a different doc. Some of your side effects may be from the combination of the 3, rather than from Xyrem alone.
Some of your side effects may be from the other 2, because Xyrem is starting to help you. But don't experiment with Fluoxetine- that can cause bad things like Seratonin syndrome.
Maybe you have too much Seratonin now or something- worth considering and asking your doc.
If you are this uncomfortable with the results, they should see you right away- I have had to push my way beyond the receptionist to the office manager (each time I did, I got in the same day or the next- and for a good reason).

From what I have read, a greater amount of deep sleep occurrs following dose 2 of Xyrem, (2nd half of the night) than following dose 1. If you are only taking 1 dose, you will minimize the amount of deep sleep you get, because there is not a dose 2.

Take good care of yourself. Please push for a sooner appointment- they can squeeze you in- then you would not need to be guessing and experimenting.

[Megssosleepy]

Megs- when I was sleeping that poorly on the 3.75 x2 dose, I called my sleep doc and made a strong request for them to squeeze me in. I got in the next day. She moved me up to 4.5 x2 and it has been smooth sailing. I am really sketchy about the idea of experimenting, but I know you are frustrated and looking for some benefit.

Here are some thoughts:
Xyrem is not the only medication you are on. You also take Fluoxetine and Adderall.
Is your doc looking at the interaction of those 3 medications? If not, maybe time for a different doc. Some of your side effects may be from the combination of the 3, rather than from Xyrem alone.
Some of your side effects may be from the other 2, because Xyrem is starting to help you. But don't experiment with Fluoxetine- that can cause bad things like Seratonin syndrome.
Maybe you have too much Seratonin now or something- worth considering and asking your doc.
If you are this uncomfortable with the results, they should see you right away- I have had to push my way beyond the receptionist to the office manager (each time I did, I got in the same day or the next- and for a good reason).

From what I have read, a greater amount of deep sleep occurs following dose 2 of Xyrem, (2nd half of the night) than following dose 1. If you are only taking 1 dose, you will minimize the amount of deep sleep you get, because there is not a dose 2.

Take good care of yourself. Please push for a sooner appointment- they can squeeze you in- then you would not need to be guessing and experimenting.

Thank you Hank, I have a few different apts. this week. I think that you are correct that mixing hasn't been the best thing for me... I brought those concerns up when I was having such a hard time with the other stimulants. Ritalin in particular made me want to drive off a cliff... My sleep doc said I needed to stick with the Prozac and change stimulants, and my Phys told me to stick with the Prozac and switch Stimulants... neither suggested the the two combined would wreck havoc on my heart brain and body! geeeze!!!! I want to stick with some deep sleep and see if that treats the depression w/o adding anymore funky drugs to the mix!

The only road block I see... is me telling my doc the depression has drastically decreased, she is just going to say its the Prozac!

[Hank]

Thank you Hank, I have a few different apts. this week. I think that you are correct that mixing hasn't been the best thing for me... I brought those concerns up when I was having such a hard time with the other stimulants. Ritalin in particular made me want to drive off a cliff... My sleep doc said I needed to stick with the Prozac and change stimulants, and my Phys told me to stick with the Prozac and switch Stimulants... neither suggested the the two combined would wreck havoc on my heart brain and body! geeeze!!!! I want to stick with some deep sleep and see if that treats the depression w/o adding anymore funky drugs to the mix!

The only road block I see... is me telling my doc the depression has drastically decreased, she is just going to say its the Prozac!

Just do your homework. Print out some medical journal articles, discuss your concerns, and she will help you make the best decision. Sleep Architecture is not something commonly considered in prescribing medications. But sleep architecture is the source of N. This obscure point is very important for you because of N. She would never give sugar to a diabetic, but sugar is fine for everyone else. The same principle applies for you with sleep architecture.

If you do need an antidepressant, there are ones to consider that do not interfere with stage 3 and REM. She will learn something new and that is always good.

[DeathRabbit]

So I tried 3x 3.0 on Friday... nooooo good, I enjoyed being able to sleep in... but couldn't kick the groggy yuck feeling till idk 5:00PM!!!!! I experimented Sat/Sun night with only taking 1 dose of 4.5 at 1:30, I don't feel so bad today, and needed my alarm to wake me. I am going to try the same dose but taking it a lil earlier (very hard to wake up!) I did get a ton of REM sleep tho, vivid as all, and very confusing! I am going to try the one dose for the rest of the week and see if it helps. The side effects have been getting annoying (shakes, sweats, stomachache, and no appetite)At the one dose I felt pretty okay this morning... I did have to eat an apple while driving to work to stay awake but hey, I do what I gotta do!

I tried to keep my dose low but was only getting an average of 2-2.5 hours on each at 3.75x2, and my EDS was overwhelming! (last week was so very bad)

I do want to note, that before being treated around 12:00/1:00 I used to wake up constantly, many times with scary SP with HH. This is why I am trying the one high dose around that time. I normally do not have trouble falling asleep! I also have found out that Xyrem does not help with sleep lengthy, so I am afraid if I up my dose to 4.5x2 I will feel very ill and still not get the 7+ I crave... Lets face it I love to sleep!!

I am not suggesting that anyone else experiment... I prolly shouldn't be myself. If any one else has had sucess with one dose I would love to hear about it! Also the one dose has to be the second half of the night for me... when that stuff wears off I CAN NOT GO BACK TO SLEEP! (until its completely out of my system, then I crash)

And my final side note... taking only the last dose means I can eat and have a glass of wine with dinner if I prefer! So if it does keep my C at bay and helps with the EDS I will be very happy!

You're allowed alcohol on Xyrem? My doc said I couldn't have any at any time of the day, because it would increase the chances of respiratory distress/arrest. I'm guessing he was exaggerating then?

[Megssosleepy]

You're allowed alcohol on Xyrem? My doc said I couldn't have any at any time of the day, because it would increase the chances of respiratory distress/arrest. I'm guessing he was exaggerating then?

I was told by the Xyrem nurse 6 hours or skip the first dose if I had something going on... this one a "once in a while" type of thing... not every night!

[Megssosleepy]

Just do your homework. Print out some medical journal articles, discuss your concerns, and she will help you make the best decision. Sleep Architecture is not something commonly considered in prescribing medications. But sleep architecture is the source of N. This obscure point is very important for you because of N. She would never give sugar to a diabetic, but sugar is fine for everyone else. The same principle applies for you with sleep architecture.

If you do need an antidepressant, there are ones to consider that do not interfere with stage 3 and REM. She will learn something new and that is always good.

OMG she was no help what so ever and got mad at me, said things like "when you get to sleeping better" or "once you get your sleep stuff figured out" I wanted to say... do you even remember what my "sleep issue" is. I have come to realize she is one of those non-believers! Im in complete shock about it. I told her about all my random side effects and she basically said they were all from the adderall (she prolly didnt know what Xyrem is and wouldnt admit it as other docs have). Needless to say I will not be taking her meds anymore, and will not be seeing her either!

[Hank]

OMG she was no help what so ever and got mad at me, said things like "when you get to sleeping better" or "once you get your sleep stuff figured out" I wanted to say... do you even remember what my "sleep issue" is. I have come to realize she is one of those non-believers! Im in complete shock about it. I told her about all my random side effects and she basically said they were all from the adderall (she prolly didnt know what Xyrem is and wouldnt admit it as other docs have). Needless to say I will not be taking her meds anymore, and will not be seeing her either!

Megs- SSRIs are not a medication you can just stop abruptly. If that is not what you are saying, please clarify. They require a reduction or it can cause some real problems. Make your decisions carefully so you get the best results.

[DeathRabbit]

Megs- SSRIs are not a medication you can just stop abruptly. If that is not what you are saying, please clarify. They require a reduction or it can cause some real problems. Make your decisions carefully so you get the best results.

It depends on the half-life. Stuff like Fluoxetine that has a really long half-life you can quit cold turkey without doing anything special. On the other hand, speaking from personal experience, Paroxetine is almost impossible to quit, even if you step down the dosage very gradually. Also, you are likely to get a REM resurgence from going off an SSRI, so you can probably expect the N symptoms to get a tad worse for a while until the withdrawal period quits.