--- In firstname.lastname@example.org
, "laura j evert"
> hi paula. hi sam. i have N (no cataplexy) and no fibrimyalgia but
> been on xyrem for many years to treat my disrupted nighttime sleep
> therefore help to improve my alertness the next day. it is not a
> perfect medication for me but is the best i have found and with the
> least side effects. my only real complaint is that i wish it would
> stay in my system longer so i could get more sleep per dose. two
> are taken at night with each lasting from 2.5 - 4 hours. for N,
> patients are usually started on two doses of 4.5ml per night and
> titrated up at 2 week intervals. i have been told that two doses of
> 6.0ml is the most popular dose. recommeded dose levels for N are
> doses of 4.5ml, 6.0ml, 7.5ml, or 9.0ml.
> i most often get 2 hours but sometimes 3 hours per dose. this does
> feel like enough sleep for me. i am at the highest dose approved by
> the FDA and my doctor is not comfortable going any higher. my dose
> two of 9ml per night. i would like to be able to take 3 of these
> per night. my doctor wants to add ambien in order for me to get
> sleep. i have not tried this yet and am not sure i will. sometimes
> will try to get some sleep before taking my doses. i heard a while
> that the company was working on a longer lasting formulation but
> not heard anything since then so i don't know. but that is exactly
> what i would like. i do know a woman with N who takes 3 doses but
> at 6ml so she is not exceeding the FDA limit of 18ml (or 9g) per
> night. for me, 6ml is not enough to put me to sleep.
> the FDA literature says that xyrem can increase depression. i find
> FDA information very extreme and do not completely believe that it
> increase depression if taken as directed for those with N and
> depression issues. (i have depression/anxiety and currently take
> of paxil each morning.) GHB has been called a natural mood enhancer
> and has been used to treat depression in europe so i know that
> it is in your system, it has a mood enhancing feeling. once it
> off, you are brought back to your 'normal' state so maybe this is
> where a sort of 'depression' is felt because the mood enhancing
> substance has been metobolized and is no longer affecting you? sam,
> any thoughts? i see my doc in early december and will ask his
> for more information:
> 1800-823-8893 M-F 10am-6pm EST; talk to others with N about living
> with N and their experience with xyrem. there is also a woman with
> FIBRO on this phone line - call and ask when you could speak with
> also, go to the website and click on the knowledge base section for
> info about xyrem and fibro.
> national fibromyalgia association
> hope you find this helpful. happy holidays everyone!
It's interesting you said that you would like to take XYREM 3 times a
night because I was just thinking about that yesterday. So far it
seems like I sleep between 3 and 4 hrs on the first dose. If I set
the alarm for 4 hrs, I wake up before it goes off but at 3 hrs the
alarm wakes me. I'm going to try 3 1/2 hrs next.
I have taken ambien for many years and still do with the XYREM. I
take my ambien about 20 minutes before the XYREM and usually go to
sleep before I start feeling the XYREM take effect.
I have been getting up earlier in the morning and feeling better
during the day the last 2 weeks. So, I think the XYREM is helping me
a good bit. I'm not feeling as depressed in the evenings the last 3
or 4 days so maybe that is not going to be a problem.