valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I did a search and only found two posts mentioning this drug. My son's new PCP suggested it because some of his CFS/fibro patients are using it.
He has to view a video about this drug.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
It's a pretty drastic measure. I know some folks who began taking it some time back. I'll ask to see how they're doing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Thanks
My 23 year old has been in pain & without sleep for six years now. Early on all the neurologists we saw had him on neurontin, elavil, topamax, gabitril, and the rest.....nothing made an impact. Neither did the muscle relaxants. So for years now he just lives with pain and insomnia......did take ambien for six months.
I googled the xyrem so I know it can be misused.
When I went thru my Hope to Heal notes from last year I had noted it from someone's talk.
What to do????? I don't know. If you can send me info from those you know......I would appreciate it.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
My llmd perscribed it to me. Been taking it for about 4 months now. Yes it can be misused. Don't try to get all high on it now. I've been using it for sleep and let me tell you its the only way I can get the best sleep with my fog ridden head. The lyme basically can tell my body that it doesn't need sleep and it fight it, but with the Xyrem I sleep and I've gotta pretty good sleep now with it.
Posts: 31 | From Los Angeles, Ca | Registered: Oct 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Foggy
I just sent you a PM with more questions. Thanks!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
My doc also says it increases the brain's supply of GABA, one of the essential brain chemicals.
Posts: 40 | From Arizona | Registered: Dec 2005
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posted
I've been using it for about 5 months and sleep great with it. I don't take the second dose 4 hours later since I sleep through the night with only the one dose.
I also take Flexeril at night and Celebrex. The drug rep told my doctor it was a much safer drug than what most people think.
(Well, of course a drug rep is going to say that.)
The main thing is, when you take it, be ready to fall asleep (be in bed) and don't fight the feeling as it takes a little getting use to.
That's why the Flexeril is nice to take a few hours before as it helps you relax but check with the doctor on that one.
I've been on it for about two months and although I am sleeping better I don't feel any better during the day.
My doctor told me that over time (several months in most cases) it repairs the sleep cycle and circadian rhythm and you don't have to be on it forever. I find it hard to believe it can fix something if you have an active infection in your brain though.
Not all doctors can prescribe this since it's GHB, the date rape drug; dispensing it is highly regulated. MD's that are interested in Rxing Xyrem need to attend a training class and the drug is only dispensed from a centralized pharmacy, you can't go to Walmart e.g. and get it.
I guess the best chances of finding a doctor that is licensed to Rx Xyrem would be a sleep specialist or perhaps LD. If interested you can call 1-866-997-3688 and ask them if any MD's in your area are prescibing it. They may not give out any information though.
It is FDA approved for some condition involving Narcolepsy but my insurer paid most of the costs despite it being used as off label. Otherwise it is $600-900 a month and there are no PAP's available.
It has a short half life; 1.5 hours, so there isn't a hangover effect upon awakening. My doctor claims great success over time, but if you still have active Lyme/co-infections who knows. Good luck,
Tim
Posts: 52 | From California | Registered: Aug 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Thank you all for the info. We watched the video last night.
Karatelady.....I am glad to hear that it may be possible to take just one dose. Presently my son only takes soma,,,,,a muscle relaxant. So it is good to know the combo can be helpful. These are good suggestions.
SemiRetired......His new PCP prescribed it for the sleep cycle reasons. My son has been six years now getting to sleep at 3-4 am.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
You also have to work out the right dosage. Sometimes it might be that he isn't getting enough or it may be too much.
The hardest part is getting use to the way it feels as you start to fall asleep so you might sit with him (I don't know how old he is) until he falls asleep so it doesn't scare him.
One time I stayed awake and ran around doing things for too long after taking it and I got sick and threw it up so I learned my lesson on that one.
After that, its great -- you really sleep soundly.
I remember my doc asking me how often I wake up and I honestly thought it was normal to wake up 5 or 6 times a night. I don't do that any more.
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I am sure the dosage is going to be lowest. How did you find the correct dosage? Can you explain more what you feel like when you lay down after taking it.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
I have had insomnia for 12 years now. This has got to be my worst symptom at the moment. I wake up every half hour and feel miserable all the time.
I have tried pretty much every other sleep medication with no success. I am seeing my doctor tomorrow to try Trazodone but am not sure if he will prescribe it because I have gone manic on antidepressants in the past.
Anyway, I am looking into Xyrem but am hoping the trazodone if he prescribes it will work. Can anyone give me some feedback on Xyrem? It sounds kind of scary to me but I am beyond desperate.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
I had a bad reaction to the Trazodone. Still looking into Xyrem. I have an appointment with a doctor who can prescribe Xyrem in March. Right now I am off all medications except for Bicillin.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
Hi there! You might want to PM "karatelady" above. She USED to use Xyrem, but now uses Xango instead. That is a natural supplement.
It helps many with sleep. She was VERY surprised it worked better than Xyrem for her!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I took it for way too long. I kept trying to convince my doc that it wasn't working for me and he just told me to be patient and increase the dosage.
I finally went in with a list of what I had read people saying about it and told him I had not noticed any of those things with it.
He then let me go off and back to my old routine, which had been working great for me! I guess the idea he had was that it would allow me to be on fewer meds, which I'm all for, but only if the new one is working!
Moral to the story is it doesn't work for everyone!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Someone in this thread mentioned that you have to relax and not fight the feeling Xyrem is causing ... what do you mean exactly? Is it scary??
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
Someone in this thread mentioned that you have to relax and not fight the feeling Xyrem is causing ... what do you mean exactly? Is it scary??
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote:Originally posted by CatWoman: Someone in this thread mentioned that you have to relax and not fight the feeling Xyrem is causing ... what do you mean exactly? Is it scary??
The first time is a little scary. It feels like your limbs are being weighed down. You feel really leaden. And then that feeling increases intensely. You can actually still move, you're not being paralyzed, it just becomes much more pleasant to lie perfectly still than it is to attempt to move your arms or legs or head.
Also, at least in my case, I had a slight respiratory depression -- I felt like I didn't need to breathe as much -- like I could hold my breath for an hour and it wouldn't be uncomfortable. That was what actually scared me. LOL But it doesn't mess with your breathing. There is a known oxygen-sparing effect (Xyrem is protective against hypoxia) so what's actually happening is that your body is feeling less NEED for oxygen.
Don't try to get out of bed. You'll find you can do it, but your head will swim like you just knocked off a bottle of moonshine. Don't focus on your breathing. Just lie there very still (you'll find that's pleasant) and relax.
An iPod or radio with the sleep timer on will be a pleasant distraction.
Oh, and EXPECT to get high as a kite.
Posts: 5 | From Planet Earth | Registered: Mar 2007
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What dose did you start at? I am at 5 mls first dose and it's doing nothing but aggravating my symptoms.
I don't feel 'high' or knocked out. I can't sleep at 5 mls. I threw up. I felt like my head was spinning a little but beyond that I didn't notice anything. I'm kind of worried it's not going to work for me.
CatWoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
I've been pm-ing with CatWoman but for anyone else who is reading this, 5 mls is considered low.
Some people go up to 9 mls as the lower amounts don't work for them.
You'll get there CatWoman ~ talk to your doctor tomorrow.
I never felt high on it (I was reading the older posts ~ just that weighed down feeling and dizzy) then I went to sleep.
It does help to read a bit while lying in bed or listen to music until you feel the affects of it. Then turn off the light, roll over and you are gone.
I don't take it anymore but was on it for about a year and it helped tremendously with sleep.
posted
I take Seroquel for sleep and it is fairly effective but I have gained 60 lbs. since I started taking it about a year ago.
Does the Xyrem cause weight gain? Has anyone here taken it for a long time? Just wondering if it would be worth switching sleep meds. The Seroquel is very expensive, but the Xyrem is more so. Not sure what to do????
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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I don't think Xyrem causes weight gain. It is quite expensive. I think without insurance it is like 700$/month?
I'm sorry to copy and paste my question from another thread but I am tired and wanted to see if I'd get more responses from posting in a few threads. I hope that is okay!
I tried Xyrem and it really didn't work for me. However, I think I either didn't understand the directions or couldn't hack the side-effects. This was back in April I think. I was on babesia treatment then and looking back on it I think Mepron worsened my insomnia (I didn't think it was possible but yeah).
When I tried the Xyrem I was never fell asleep on the first dose and so I was awake through it all and needless to say it made me feel horrible (crying, anxiety, felt like the room was spinning, nausea, gagging but couldn't throw up). I only managed to get up to the 2nd nighttime dose once or twice because it freaked me out and it was such a horrible head trip for me. So I'm realizing I never tried it exactly the way the pharmacist says to. I couldn't handle it at that time. I thought you had to fall asleep on the first dose to take the second one 2.5 hours later.
Anyway now that I am not on babesia treatment it might have a better chance of working if I can handle it??
I still have my Xyrem and it expires in a few months and I am thinking of trying it again because well 1.) I never really tried it exactly the way you're supposed to the first time 2.) I might as well I have a few months before it expires. And my sleep is still really bad.
Does anyone have advice about Xyrem? I want to try it again but I'm afraid it will not be good for me because I have nausea issues already.
I just got back my spect scan results today and they showed I have some encephalopathy. Could this affect the way Xyrem works on me? I have had an awful time with psych meds (I get the rarest side-effects usually and antidepressants make me manic).
I want to try Xyrem again but I am nervous about it. Has anyone been in a similar position?? Did Xyrem not work the first time but worked a second time?
Thanks for any info.
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
Catwoman, I don't think very many with LD are on xyrem.
I was on xyrem for about 9 months (back when I thought I had alpha wave intrusion sleep disorder from FM) and it worked fine. My health went from 20% to 70-80% in that time.
Then I was hit with a really bad relapse out of nowhere, and was worse than ever. Later I was diagnosed with lyme disease.
So, I don't know if I got lyme last autumn, or if the relapse caused new damage, and I've had LD all along. Anyway, xyrem has been a challenge since then for me.
I explained to my LLMD that I can't get enough sleep on it. It takes too long to go to sleep, and I wake up very alert on it. I do however get sleep on both doses.
Going up higher just made the alerting effect stronger when it wore off.
The doctor told me to use klonopin with it. It has been working very well for me since then. The klonopin smooths out the xyrem.
Klonopin is also neuroprotective for those of us whose brain stays too revved up to get into deep sleep.
I hope you find a solution soon.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Thanks for responding. I'm glad you are getting some sleep.
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Have you considered Lyrica? I get good sleep with 100 mg of this, prescribed by a LLMD psychiatrist who is WONDERFUL in understanding how all the meds affect the brain during LD.
PM me for more info.
Posts: 3528 | From US | Registered: Apr 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
wow. im glad so many lymeies are getting good sleep on xyrem now.
ive been struggling with sleep for a year now because of pain and brain and ive now gotten it down with ambein and 2-4 mg xanax.
but, i dont want to take xanax anymore, so i might give xyrem a try. i have 3 month supply as i was going to go on it when i had bad insomnia (it was weeks and got to the point where i was delerious) so yes, i think xyrem is a drastic measure too.
on nights where i dont fall asleep by 2 or 3, i take trazadone, and that usually knocks me out.
this is a physc drug, btu is effective.
only thing i dont like about it is it messes with your brain chemistry, and, i can tell.
anyway, has he tried trazadone?
has he now tried the xyrem?
i am kinda scared to try it too but now i am less scared due to all the stuff i read on here.
yay!
did anyone have a bad "hangover" the next am during their initial use or find their brain worked slower? that is ONE thing i can NOT stand.
thanks guys
humbly
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
i haven't had any luck with lyrica for sleep.
derek,
you shouldn't have a hangover with xyrem since it clears from the body so quickly. the half life is incredibly short (hence the twice night time dosing). Sorry were you asking about the hangover with Xyrem or another drug?
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
Derek, I had the opposite experience. Since I started out with a very low dose to get used to it before titrating up, I didn't get more than 3.5 hrs sleep. But, I was very alert the next day.
When xyrem wears off, it has an alerting effect.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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