Coming off of Xyrem severe rebound insomnia HELP

Index Support Center Forums Treating Narcolepsy Coming off of Xyrem severe rebound insomnia HELP

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  • #11778
    Avatarmag_pie
    Participant
    @mag_pie

    Hello I’m a 35 yold female with narcolepsy w/o cataplexy and have been taking Xyrem 3.0 g twice a night previously treated with just adderall/ Klonopin, which worked fine for two years. Xyrem has been ruining my life, I have depression/anxiety and Xyrem made it far worse, had to take FMLA for my job for frequent calling out. When waking up from Xyrem, I would panic or have a panic attack or would be so depressed/ zombie mode, I couldn’t get out of bed. Days I did go to work, I had major anxiety and would have such dilated eyes, I couldn’t see well, days I would panic I thought I was dying and learned to just take more xyrem and maybe wake up better. I am a anesthesia provider and need all my faculties in check, I was missing work 1x a week and now I am currently on continuous leave until I can get off this medicine. Before Xyrem I had a better quality of life, sure it was difficult but I did not have to carry xanax in my pocket in case of a panic attack at work. I have two weeks left to fix myslef, so far I cant sleep for the life of me.
    I quit cold turkey for a week and didnt sleep at all. I drugged myself up with everything I could possibly think of but my tolerance to benzo’s so so high, from the frequent panic attacks, nothing I take makes me go to sleep. I need to replace the Xyrem with something I can fall alseep with. Big part of my narcolepsy was the insomnia associated with it. Now off Xyrem Ive tired Lunesta 6mg, Ramelteon 8 mg, Xanax 6mg, Klonopin 2mg, gabapentin 900mg and ambiem 5mg with no sleep. I can mix them together and get some sleep but I’m afraid I might overdose. My doctor doesnt know what to do, he wants to put me on the Xyrem again. Please help, I am willing to fly out and get a second opinion. I cant take the Xyrem again, I dont like the mental fog, dilated eyes and shakey hands and the fact I cant function on it. I never had this bad of rebound insomnia. Please advise. What other medication can I be on other than Xyrem to help with my Narcolepsy’s insomnia part? And what to do about this rebound insomnia, should I taper? Lower doses just make me hyper. What antidepressants are pwn on that help?
    Thank you

    #11782
    Avatarmobilealguy
    Participant
    @mobilealguy

    I can’t offer much help, but you might try checking the threads on non-RX treatment strategies. There are others that might chime in as well.

    This thread is of interest to me because I’m almost in the same boat. I’m still currently on Xyrem but do not love it. I’ve had side effects that I’m trying to work through, though mine do not seem as debilitating as yours. I was at 4.5g twice nightly for a year and a half and would get on average around 5 hours of sleep. It was good sleep so while it wasn’t a lot I would feel refreshed. After researching yet another side effect in mid-September, I found a website that noted that side effect usually presented at the highest dose. That triggered my memory because I remember telling my doctor I didn’t like the way Xyrem made me feel when I first went to 4.5g, but he told me my body would adjust and I’d get used to it. That night I reduced my dose to 3.75g twice nightly and woke up the next day and could feel a difference. So I kept taking this dose. I counted 7 side effects I had at 4.5g that completely went away at 3.75g for 2 months. Recently a couple of them have come back at times but isn’t constant. I’m not getting as much sleep (but it’s a trade off I’m willing to take). I’m now back to taking adderall during the day when needed. I am going to play around and see which dose works the best for me. I might try 3.5g for a bit.

    I did want to say before Xyrem I tried Lunesta, Ambien, Klonopin, and Doxepin (hopefully I’ve spelled those correctly) but NOTHING put me to sleep. So that might not be Xyrem’s fault. I’m afraid if/when I come off Xyrem I’m going to be in your boat and miserable with insomnia. Please keep us updated!

    #11785
    AvatarNatdoc
    Participant
    @natdoc

    mag_pie
    Sorry to hear of your troubles. Look, xyrem is certainly not for everyone, when it works it works well and when it doesnt life can be miserable. Every Physician has his/her own protocol for dosing xyrem as well as taking into consideration the recommendations made by jazz pharmaceuticals. After many years of trial and error we have found that what works best for us is the following: Start at lower doses and use every other day, increase slowly over the course of the next several weeks
    still using only every other day, and if you have the chance and can take a “holiday” then do so. In this manner if side effects become severe, tapering off is a very easy thing and with much less severe insomnia.
    There are a myriad of causes of insomnia, medication issues are one and this may include interactions between meds prescribed for sleep, and meds you are already taking, Most medications “touted as sleep aids are not very effective whatsoever but regardless of whether you opt for medications or not, CBT is the most effective treatment for insomnia. It would be interesting to see the results of your psg and see if there are other factors which may be contributing to the problem.
    I would urge you to hang in there and persevere as there are answers available As mobilealguy suggested try visiting the thread here non RX treatment strategies
    I wish you the very best

    #11792
    Avatarmag_pie
    Participant
    @mag_pie

    Thank everyone for the reply,
    I was wondering if there is anyway I can fly out and make a second opinion appt with you I have until Jan 20th off. I have all of the triad of narcolepsy, sleep paralysis since I was 12 years old, hallucinations while falling and waking from sleep that a psychologist but me on Klonopin for years since I would panic from those and 2 REM sleeps on MSLT. I was on Xyrem for a year and the highest dose I could get to was the 3g if I lower it, I just get hyper and cant sleep even more. I just went back on in and I havent moved from bed this whole week, it really messes with my anxiety/depression.
    I need someone that’s specialized in narcolepsy and not be the one narcoleptic patient, like my Dr has. Please help
    Thank you,
    M

    #11795
    AvatarNatdoc
    Participant
    @natdoc

    @mag_pie
    If you can let me know what area of the country you are in, perhaps I could provide a recommendation
    Perhaps this medication is not for you.
    By any chance have you had Genesight testing? if not I would certainly recommend it
    What kind of results did you have on the psg prior to your mslt? was there any mention of alpha intrusion, what about sleep stages, which ones and what percentages?, any leg movements?, what about arousals?What was the sleep onset latency and REM onset latency?Any REM sleep? was it tonic or phasic?
    Lots of questions need to be answered for you
    What medications have you tried for anxiety and depression?
    All my best

    #11812
    Avatarmag_pie
    Participant
    @mag_pie

    I live in Miami/broward country in Florida. The sleep center tests, I did a long time ago and no I have never have genesite testing. I will look it up now and see where I can find it.
    From I remember from the tests, most of my sleep was spent on light stage with the lowest percentage being deep sleep with several arouses at night. I wear a Fitbit and it’s always the same stage one sleep with several arousals and very little deep, even with xyrem. During the sleep center testing I had No snoring, which that was good but I felt like I never slept that night of the testing and I was told I basically was in stage one the whole time and fell into rem quickly when I had the naps on the MSLT, which I feel alseep for all of them
    I’ve had leg twitching before falling alseep, when 1st starting the xyrem my legs bothered me much and I felt I had restless leg syndrome, it went away after a couple of months. They felt like I wanted to rip them off a one point with the burning and aching.
    I should get a copy of the sleep results sent to me. I have a fit bit and even with the xyrem I don’t get much deep sleep, my biggest percentage is always light sleep. It also noticed something these days odd of work, it’s that I have a natural rhythm to get deep sleep at 5am. It’s a trend I see over and over I wonder if I have Circadian rhythm problems. I would really like any referrals you have here down in Florida. I’m very happy to find this ite. site and have a dr that’s actually knows what to do and how to manage.
    I’m severely desperate and need help, I feel my current dr is dismissing me and doesn’t know how to deal with me. Please help me with this I’m desperate to get back to my life before xyrem state, even with the sleepiness, I wasn’t as much as a mess.
    Please If you can help please PM me at my email, mhajje001@gmail.com

    #11818
    AvatarNatdoc
    Participant
    @natdoc

    mag_pie
    It sounds as though you have several things going on. First of all though if you did not get any better sleep than stage one sleep on your psg, the mslt was basically worthless. The primary reason for conducting a psg prior to mslt is to assess the QUALITY of sleep overnight, along with checking for other disorders which may mimic narcolepsy, stage one sleep is basically no sleep at all so naturally you will be extremely tired and sleep on the following day.
    You may very well have a circadian disorder or others which keep you from transitioning to the deeper more restorative stages of sleep.Without the technical data on your study it would merely be a guess.
    I will send the name of a physician to your email, although she is in Atlanta if that is OK

    #11839
    AvatarMikeG80
    Participant
    @mikeg80

    HG Mag Pie,
    I have been dealing with my Narcolepsy WITH Cataplexy for 15 or so years now and have at one point been on every combo of meds to help. Firstly, I don’t know why your doctor would put you on Xyrem, it is primary used to combat the Cataplexy. So if you don’t have Cataplexy, I wouldn’t even bother taking it. I don’t even use it anymore, because it was causing me to go into more paralyzing attacks then without it. Have you tried cutting your adderall to just “Take when Needed”. I was probably averaging 2hr night when I took it every day. If you stop your adderall cold turkey, you will start sleeping the next night and pretty much the next 2-3 days. Once you get that few days to absolute tiredness out of the way, use the adderall only when you absolute need it. Don’t stop your benzo’s though. But you also might want to try to cut down that dosage also, sounds like you have a high tolerance with them. Trust me, I know how hard this is to live with. You have to constantly adjust your sleep habits. I’m happy if I can a straight 3-4 stretch of sleep at night. You might want to try herbs like melatonin, valerian Root, Chamomile, passion flower….CBD has really helped my with my sleep. I use the CBD vape juice every night before I go to bed and that has really helped me sleep a few hours strait every nigth. I would wake from my sleep easily 1-2 every hour during the night, so If I was in bed 8 hours I would actually only get like 1-2 hrs of real REM sleep. Best advise I can give you is to try different things and you will eventually find different routines and Natural Herbs & Med Prescriptions that work for you, and adjust when you need to. If you doing good, cut down if your having a bad few days or week, up it a little. I wish we could just take a pill a day and it would go away, but this is something that you have to make part of your life. And nobody understands how hard this is to live with…your ruins alot of lives, especially people who have it so bad they can’t get it under any kind of control. So just hang in there, try cutting out the adds for a bit, don’t try and sleep if your not tired, No tv phone etc when you lay down. You also may want to consider a different Sleep Doctor or you can also go to a Neurologist. Good Luck.

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