Xyrem Update

Discussion in 'Fibromyalgia Main Forum' started by Meghanne, Apr 9, 2006.

  1. Meghanne

    Meghanne New Member

    Sorry I haven't been around. The septoplasty went fine, but just had to take it easy a while.

    I'm up to the full 9 ml on the Xyrem now, and doing pretty well most nights. Some nights it's still rough, but it gets better every week. It's rough when you have to make a bathroom trip and your drunk as a skunk from the stuff, and you trip on your greyhound. *chuckle*

    Hope everyone is doing alright.

    Trish
  2. NyroFan

    NyroFan New Member

    Meghanne:

    I remember reading about your septoplasty and am so glad it went well for you. You have a nice sense of humor about it, which means you probably will get better faster than most.

    Take good care of yourself and thank goodness it is over.

    nyrofan
  3. bunnyrabs

    bunnyrabs New Member

    I was wondering how you were doing lately, and was considering bumping your old thread on this subject. It's good to see that all is still going well. How many hours of sleep are you getting for each dose at 9ml?

    It's funny you talk about the "drunk as a skunk" phenomenon because my spouse, who sleeps like the dead, looks exactly like that during trips to the restroom in the middle of the night, bumping into everything and knocking stuff over. So, maybe that's how normal sleepers' brains make them feel and behave when they are aroused from the precious deep sleep that we don't get (I can't remember what deep sleep is like cause it's been too long), and now that you are on a drug that makes you sleep more like them (normal), you get to join their ranks and stumble about in the darkess!

    [This Message was Edited on 04/09/2006]
  4. Meghanne

    Meghanne New Member

    I'm getting a good 4-5 hours a dose on the Xyrem, and less daytime fatigue, no hangover effect either. I've been on it about a month and a half I think now.

    Trish
  5. pawprints

    pawprints New Member

    Do you take two doses at night or just one? I am still have bad side effects from Xyrem.

    Shana
  6. bunnyrabs

    bunnyrabs New Member

    pawprints,

    What kind of side effects are you having?
  7. Meghanne

    Meghanne New Member

    A tiny bit of water retention, I imagine from the sodium content, and of course the drunkenness if I do wake up and need to go to the bathroom. Other than that, nothing. None of the nightmare possible bed-wetting or sleep-walking. And no hangover in the morning. It's out of my system by then.

    Trish
  8. bunnyrabs

    bunnyrabs New Member

    Trish,

    Were you scared to take it your first night? If so, how did you convince yourself to do it? What were you thinking about as you waited for the medicine to kick in for the very first time?
  9. caroleye

    caroleye New Member

    Been watching this RX, and wondering what Dr.'s are prescribing it? Your G.P., or a specialist?

    Thanks & glad it's working for some..........carole
  10. Meghanne

    Meghanne New Member

    Yes, I thought about it the first night, I mean...it IS GHB the date rape drug. I wondered what it would feel like, how soon I'd fall asleep. I wondered if I'd walk in my sleep or wet the bed, two potential side-effects. Would I do something dumb that my fiance' would make fun of the next day, would I trip on a greyhound if I had to go to the bathroom in the middle of the night.

    Yes, there was some trepidation taking that first swallow, but I actually didn't feel much effect until we got up to about 7ml, then it started working.

    There wasn't much to convincing me though. I was desparate. I hadn't gotten good sleep in 3 years. I lost a job because I kept having to call in "sick" because of extreme sleep deprivation.

    A sleep specialist prescribed it, through the Methodist Sleep Clinic here in Memphis, actually suburb Collierville.

    Trish
  11. pawprints

    pawprints New Member

    My side effects were rebound, like anxiety or nervousness the next day. I feel like I am on overdrive, but it is not pleasant at all.
  12. Meghanne

    Meghanne New Member

    Sorry to hear you have that problem with it. At what dosage? I'm at 9ml and never had a problem the next day. Every day I feel a little more energy.

    Trish
  13. bunnyrabs

    bunnyrabs New Member

    Pawprints,

    I wonder if it is just your body's reaction to a sudden, dramatic change in your sleep architecture. Even if the sleep is going from bad to good, it makes me wonder if it is a shock to the system to go from a long period of bad sleep to an abrupt change to good sleep.

    I remember going from good sleep to bad sleep when I developed fibro, and it was a major shock to the system and took me a long time to get used to the "new normal". I suspect the reverse will also be true for some, probably depending on how long you have been sleep deprived.



    Trish,

    Glad to hear of your courage to take it. It seems as though your fears were alleviated once you actually took the "date rape" drug and discovered you were still alive the next morning and that nothing bad happened to you. I have read of others, especially narcolepsy patients, who have noted the same experience.

    That is why I am appreciative that you continue to take the time to update us all on your progress. If this drug actually gets approved for fibro, I think a lot more of it will be prescribed, and others need to be able to read up on the experience of other fibro patients who have already tried it, whether with good or bad results.[This Message was Edited on 04/11/2006]
  14. pawprints

    pawprints New Member

    I am so sensitive to medications. I think because I have more CFIDS than FM. My dose was at 5 ml.

    Is yours 9 mls two times a night? Do you have more CFS or FM symptoms?

    I have not given up on the Xyrem, just take breaks when I can't stand the anxiety.
  15. Meghanne

    Meghanne New Member

    Thanks for listening everyone! You've all been so supportive as I've done this. Tomorrow I'm calling a new Rhemy to make an appt. Cross your fingers on that adventure. LOL!

    It's been a weird wild ride on Xyrem, and I wish we had more people to pipe in so I could see how I compared. They do have a patient advocate line staffed by patients, and I've thought of calling it, just to compare notes so to speak.

    It is 9ml twice a night, so 18ml total.

    That was a good point. I think my body is going through some changes adjusting to good sleep after three years of erractic and sometimes *8 days once* no sleep. Every day isn't perfect, but every day it evens out more. :)

    I'm happy to share my experiences, and happy to answer any questions. Nothing is too personal. I'm an open book.

    Oh, and I'm Fibro diagnosed only at this point, without CFS. Not sure if I think I fit the diagnosis or not.

    Hugs to all,
    Trish
  16. sleepyinlalaland

    sleepyinlalaland New Member

    on previous threads about my experience with Xyrem.

    After many decades of very poor-to-no sleep, I had greatly looked forward to this last resort medication.

    I had several problems with it. The first is that the second dose NEVER put me back to sleep, and a few times it made me vomit (ick). I decided to just forego the 2nd dose and figured that the 2-4 hours deep sleep I got with the first dose would have to still do me good.

    With the one dose, I still got an initial 2 hours sleep, then seemed to fall back into 2 more hours twice for a total of about 6 hours sleep. It did feel very different to REALLY sleep, but I never could figure out why I was still SO tired the next day....even EXTRA tired. I think I've figured out the reason: I SNORE REALLY LOUD!

    I had a sleep study to rule out apnea. No apnea, just "severe snoring". The night of the study I didn't use Xyrem (klonopin), and didn't get much sleep, but for the little time I was asleep, SNORING was recorded.

    I decided to record myself asleep on the Xyrem. I sawed logs non-stop for the 2 hours that the recording lasted. My theory is that that's why I am so unrefreshed by the deep sleep of Xyrem. Even tho I don't have apnea, the vigorous snoring must be wearing me out. Unfortunately, my "snore" doctor didn't think there was a good solution. He also didn't think that the snoring should really be a problem for me because although it was reported "severe", it didn't last long (neither did my sleep).

    He also disapproved of the Xyrem, so probably wouldn't be sympathetic to my concerns about snoring and Xyrem.

    I do find it intersting what others experiences are with this, so thanks for posting.
  17. Meghanne

    Meghanne New Member

    Funny you mention the snoring, because I asked my fiance' last night if I was snoring less now that I had the septoplasty two weeks ago, and he said, yep. ;) So maybe that's helping me too.

    I'm sorry it didn't work for you. In the beginning the first dose wouldn't work, and I'd still be awake to take the second dose, and then I'd finally fall asleep. Now both doses work. If I wake up "early" for a potty break, boy does it feel gross and drunk though. :) I've had one or two panic attacks because of that feeling, but it's settled down.

    I had to go out of network for this doc, but since we'd ruled out apnea before he didn't make me do another expensive sleep study out of network, and when I just got to the 9ml dosage I asked the nurse when to come back in, she said 6-12 months. Whenever, unless I had some problem that couldn't be resolved over the phone. WOW! :) That's good news for having to pay out of network. Even with a PPO it pays 50 percent, but still..that sleep study could have killed me, especially as I'm unemployed now.

    Trish
  18. pawprints

    pawprints New Member

    I think my response was more due to my own sensitivies. I have since read that Xyrem is better tolerated by those with only FM, and not CFIDS.

    All that being said I am still trying it, just not every night. It seems to take several nights to build up to where I wake up anxious. The anxiety grows throughout the day. I heard it is called a rebound effect.

    Thanks for the updates.
  19. bunnyrabs

    bunnyrabs New Member

    Trish,

    Did you get up for bathroom breaks before you started Xyrem? In other words, is this a normal routine for you? Or does the Xyrem make you have to go to the restroom in the middle of the night? Are the effects really that bad if you have to get out of bed? I guess it depends on whether you like feeling drunk or not LOL!

  20. Meghanne

    Meghanne New Member

    I have interstitial cystitis so frequent bathroom trips are normal for me. I wake up less for them on the Xyrem though, because the little bits in my bladder don't wake me up. Did that make sense? :)

    Trish