Wondering if any have tried this and what your verdict is.....

I didn't know what it was - so I had to look it up.
http://www.drugs.com/cons/Nabilone.html
http://www.mayoclinic.com/health/dru...ation/DR202385

Hi friend,
I don;t think this is avaiable in US. Unless recently...
The only chat that came up I understood it to have varied side effects. Like moving the head to the side to look out a window driving and losing perspective , like a lightheadedness.
Also warnings; it is a suppressant of the central nervous system.

But that is just chatter and not from any medical folks,
Hope you find relief and are enjoying summer.
Di

What do you need it for?

hi, victoria,

nabilone, ah baloney! get it? hoo, i crack me up! hee, hee, you'd think i was on the stuff, not you...

and just whom do you think you're kidding here my dear nursy, we know you're already your own guinea pig - so you tell us: how is it? does it compare to the stuff you may or may not have smoked in college (i'm sure you didn't inhale, though...)?

i hope it's helping you and that whatever negative side effects there may be, the good far outweigh the bad, victoria. this may be just the ticket to help tide you over that long, long wait period until somebody croaks up there in calgary and you can get in to see the good PM doc! oh, horrors, what a thing to say, will i never cease to amaze. well no, probably not. you guys are stuck with me, sadly...

and withmore, you cannot be serious. what does she need it for hmmmm, let me see. could it be... i'm thinking here, i'm thinking... perhaps a wild guess would be severe pain and fatigue from TOS? could that be it? with maybe some crap from CRPS and or FMS thrown in, just for fun... and perhaps a dash of PTSD from that family of origin stuff, yes i think no one gets out of that birth family thing unscathed and the 30's seem to be the timeframe those dues start collecting; watching my own daughter go through that right now and i gotta say it's sheer torture... god i wish i had been a better mommy to her when she was growing up.

but i digress. actually, victoria, said daughter has been after me for some time to obtain a prescription for medical MJ which is "legal" here in CA (the feds can still bust you but the state looks the other way - kinda confucius); anyhow i am seriously considering trying that to tx the awful pain sx. the opioids really don't do much for me, and haven't had much effect for a looooong time due to neural plasticity or central sensitization or whatever the **** you want to call it.

do let us know how you fare with the nabilone. it sounds like a logical med to try and it may also help with distracting that rather large brain of yours from the somatic sx, too, which would be a great plus i would think. do you draw or paint or anything like that, victoria? maybe sign up for a watercolor class or something, that might be fun and a wonderful creative outlet for you. i think that any form of artful expression is a good tool when it comes to pain management. diversion = part of what we're here for (to my mind, anyway) + anything that takes me out of my head i know helps me. (dangerous neighborhood, if you catch my drift!)

cheers,

alison

PS withmore - i was just fooling around, only kiddin' sweetheart and i mean no disrespect... so please know that, OK?

I am taking this pill to try to alleviate pain, neuropathic and muscular pain that is so painful it has been at an 8/10 regularly as of late

I have had it and can't live in pain.....death is better than this pain!!!!!
so I try in vain to get some relief from this horrible tos monster and the blows it delivers daily.

I hope this explains why..
Alison summed it up pretty well.....

Life is hardly a life if you can't involve yourself in it....or you have no you left to be in it!!

Alison distraction would be nice if I could get out of the chair in my L/room....my heat my tv and my cpu.......

I have painting supplies and scrapbook stuff, but don't have the inclination to do anything on this med....and can't drive....so have decided today after argument/discussion with DH......so will back off at my decision due to the effects may take it at 9pm to help sleep and be free of pain at night...and then be careful to see if I am still stoned in the am.....
Victoria

I won't appologize for asking because it's not something that is necessarily needed for TOS, nasuea yes, but I'm sure you knew that already .

Ohh... Victoria - I hope you can find a balance with it so it is enough to help you but not too much side effect.

hi, victoria,

i briefly glanced at the med's "official" gobbledygook, only enough really to realize that your doc is obviously rx'ing this med for you as an off-label use for severe pain and not for nausea or anything like that.

but here is my question for you, as the sedating side effects do seem so overwhelming (and that is such a drag!): is there any chance that that particular side effect might subside as your body becomes accustomed to the med over time? or is there any way to lower the dose (grasping at straws with this second question obviously, as you will have tried it already...)?

i think your idea of dosing only at night before bedtime is a good one. thank you for sharing your experience with us about this med, victoria. i am so sorry your pain levels have gotten so high and stayed there. i, for one, know only too well what that is like and i empathize with you. you are in a very tough spot and you are very smart to recognize the dilemma.

a lot of people would be either too depressed or too medicated to see what you so clearly see, victoria. you should give yourself a lot of credit for that. you have a beautiful soul and so much to offer the world. i have faith that you WILL find a way to not only remain engaged in it but to slay a ton of dragons and to help many damsels in distress. laddies, too!

that this is a source of disagreement between you and your man only tells me that he loves you deeply and he wants you PRESENT in his life when he comes home to you from a hard day's work, victoria. i wouldn't read any more than that into it.

but do talk to your doc or perhaps write the manufacturer about the possibility that you're just experiencing some sort of an adjustment period and that these oversedating effects will ultimately subside and the beneficial ones remain so that you could then stay with this med for some period of time and reap the pain management benefits without it stealing your consciousness or your drive to get anything done, creative or otherwise, during the waking hours.

withmore - no harm done and no need for an apology i am sure. but it's not uncommon at all for an experienced PM doc to do something like this, and prescribe a med that has been developed for one, specific purpose and rx it to a pain patient for a so-called "off-label" use. similar to the anti-convulsants like neurontin and lyrica being rx'd to tx neuropathic pain.

my PM doc recently gave me samples of an alzheimer's drug found to be helpful in tx'ing neuropathic pain; said he was giving it to me as an off-label use for that purpose. well, it didn't do **** for my pain. but guess what? it really, really helped my depression... more than any so-called A/D ever had, i gotta tell ya! and it was actually victoria who sent me an abstract of an article from the medical literature on this med which made me realize that it IS also being used to tx depression, on an off-label basis.

it's called Namenda, if anyone is interested (but there are others in the same class). it targets the NMDA receptors in the brain - which the "pain brain" has waaaaaaaaay too many of, typically, and that is part of the reason why the pain meds don't work so well anymore, at least in theory...

anyway i'm offtrack again. how like me!

victoria, best of luck to you and we will talk soon i am sure. thanks again for starting this thread. now, get out those painting supplies, woman! maybe you can learn to paint with your feet like daniel day lewis in "my left foot," which was one of the movies i worked on in my other life when i was actually a productive human being. and I'LL make a scrap book about YOU, then, hahaha

alison

No apology needed for asking, we all love to educate and bring people into the light....but.........

I find it very disturbing to know that uneducated things are being said here. I am a well educated registered nurse and do very thorough research before I take any medication.....and Namemda is next as to the info I have found on it!!!! Some info suggests that (yes Alison we have our facts)..... it will prevent you from getting used to a narcotic and then have to keep increasing your dose. Fortunately not all of us have the same pain levels with tos.

I hope that no judgments are being passed in this SUPPORTIVE group. We are here to be educated supported and feel like we belong, not to be subjected to ridicule. Never will an apology be asked for if a question is asked NEVER is a question stupid ever ever ever!!!!!

We make our own choices based on our own research. Perhaps you should visit a site called pubmed which outlines all studies that have been done on MS and nabilone for neuropathic pain. Here in Canada we give our MS patients marijuana for the pain and muscle spasm. It is well documented that it is effective in treating this type of pain.

Pubmed is a great place to find abstracts on articles....if you find something u like I am able to see if I have access to it with my university access to library articles online.

Just because a medication is used for one reason does not mean that it should not be tried for another thing....eg.....Viagra was invented to increase blood flow to lungs and heart for patients with heart disease.....
neurontin was originally used for seizure patients and is now widely used as a neuropathic pain medication, the list goes on and on.......since the beginning of medication.........

Welcome here but again judgment checked at the door please. Please share your ideas and thoughts and we can discuss....but judgement is not tolerated well.