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04/28/2008 02:24 PM

Pain clinic and sleep doctor

sindee4499
sindee4499  
Posts: 87
Member

I have been going to a pain clinic for about 9 months I love my dr. because she takes fibro serious and has tried everyway possible to help me, she has done lots of testing including MRI that showed I had a ruptured disc in my neck that was laying on my root nerve and spinal cord, another bulging disc that is right above my tail bone (severe lower back pain) and DDD. I had surgery in dec to repair my neck and it has helped some but is really taking a long time to heal.Nerve conduction test showed reticolopthy (sp?) on my right side, She also sent me to physical therapy and to a wonderful sleep center my sleep study didn't show the normal pattern for fibro but they are still convinced I have it but now on top of everything else he thinks I have narcelipsy (sp) I just got back from an appt with the sleep dr. and he wants me to go on zyrem he says that is the only thing left to try since the pain dr has me on Opana, loratab 7.5, baclofen 20 mg, lyrica 150 mg x2, wellbutrin, ketoderm cream and elmiron the only thing is he says it can take up to six months to work and I have to be off all narcotics while taking it. He says I can still take the lyrica and hopefully use the ketoderm cream (if you don't have this stuff it is a miracle cream I am not sure what all is in it I know it has lidocane, elivel, ibubrofin, and muscle relaxers compounded in a cream that you rub on you when you are hurting it works great on my neck and lower back but my legs are very tender right now and my hip is killing me and its not working on that but it is great stuff) anyway I was just wondering if anyone has tried the zyrem and what were the results and what do you think about coming off all the other meds? Sorry this is such a long post but I am ramblin g side effect from the ritalin and opana LOL please forgive me...
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05/15/2008 08:58 PM
sindee4499
sindee4499  
Posts: 87
Member

;

05/15/2008 09:43 PM
red4photos
red4photos  
Posts: 18
Member

Hello sindee

You know the fibro study medication that they are advertising on this web site, it is xyrem! They are trying to see if it will work for Fibro. I am on the study medication and it has definitely changed my life. I am not well but man it really is worth it. If I were you I would give it a try. I don't know about it taking many months to help you. It helped me the very first day. (there was quite a bit of nausea that day but that was fine because of the relief from pain.) Because it is a study they won't let me take anything else (except for a small amount of Tylenol) I still think it is worth it. I still hurt some but I went from hurting 7 out of 7 days to only 2 out of 7 days. I wrote a long description of my experience on this forum.


05/16/2008 10:37 PM
sindee4499
sindee4499  
Posts: 87
Member

Thanks red yea I had to sign a piece of paper saying I wouldn't take any narcotics and a bunch of other stuff with it basically all I will be allowed to take are my hormones, my wellbutrin, and I think lyrica that is the part that scared me if it doesn't help for 6 months what would I do until then? Glad to know it doesn't always take that long. The only other thing that I am worried about is that my husband was just told that he has to move to night shift so that will leave me home alone with the kids and I was just wondering if I will be able to wake up if they need me?

05/19/2008 02:01 PM
red4photos
red4photos  
Posts: 18
Member

Honestly, sindee, no. The first week you cannot help anyone all night, but after that (at least with me) there is a good 3 hours after the second dose that I am useless to myself or my family. How old are your kids? The second dose is 2.5 hours after the first dose. My kids are good and asleep then, and my neighbor could help us if there was an emergency and my husband was not here. It is a strange medicine. I have driven on some things I should not have, but I won't on this. My son (13) ran away after the first dose one night and I had to let my neighbor drive to look for him. And I did not take the second dose till we found him because I would have crashed.

05/19/2008 09:48 PM
sindee4499
sindee4499  
Posts: 87
Member

My kids are 15 and 8 so if an emergency did come up and we had to go somewhere my son could drive he has his permit and is a good driver but my 8 year old daughter is bad about getting up in the middle of the night and knocking on my door she doesn't really need anything just wants me or her dad to walk her back to her room and put her back to bed I guess I could let her sleep with me just really didn't want to start that again since we only got her sleeping in her bed a few years ago and my son is such a heavy sleeper I think the house could be on fire and it wouldn't wake him so I have alot to think about before I decide to take it but I have been praying about it and figure if the insurance approves it then it is Gods will and I will go for it and see what happens.

05/21/2008 11:02 PM
kesslmama
faieriemama  
Posts: 3346
VIP Member
I'm an Advocate

I am glad this medicine is working for you red4photos. sindee4499, i would reccommend doing some research o this at www.drugs.com. You should find some helpful information on there, that might help with your decision. I can't take this because one of the side effects is that may cause seizures, and since I already have these we decided that it woul dbe a good one to avoid.Tongue

05/22/2008 05:25 AM
sindee4499
sindee4499  
Posts: 87
Member

I will thanks my pain dr said I may have to decide which

05/22/2008 05:27 AM
sindee4499
sindee4499  
Posts: 87
Member

sorry it posted by itself for some reason my dr. said I may have to decide which is more important my sleep or easing the pain so I have some decisions to make so I will def. do more research thanks

06/26/2008 11:43 AM
bshapiro
bshapiro  
Posts: 467
Member

hi,

sorry to be sticking my nose in here (I don't forum around much anymore) but I think your dr. is wrong to make a general statement about having to choose between opioids & Xyrem.

I take a ton of Opioids (methadone, oxycodone) & have just been approved for Xyrem use.

According to the Pharmacist at Jazz (Zyrem mfgrs) who spent an hour on the phone with me reviewing my meds & my own neurologist the only issue about using opioids & Xyrem together is that I need to take my last methadone dose 3-4 hours before I take the first Xyrem dose &, because I have a sleep apena as well, I will need to use a CPAP machine to deal with the apenea as all three(opioids, xyrem, apenea) depress respiration.

Per the Mfgr I can take all of the following as well as the Xyrem

methadone

oxycodone

xanax

Welbutrien (buproprian)

provided that I that the last dosage 3-4 BEFORE I take the first Xyrem dosage

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