Dear all
Another hot and humid day - nightmare! Yesterday I was prescribed Sativex (500 euros a pop!) by my neurologist - a cannabis based spray taken orally. Do any patients have experience of this treatment? Am I going to be spaced out, listening to Pink Floyd after each dose!? The spray is suitable for patients with walking difficulties, so I am hoping to see some mobility improvement.
Have a pleasant weekend.
Richard S.
hi richard
i don’t take it myself (although i’d like to) but my friend who also has ms swears by it. it helps him with the spasms in his legs.
hey and there’s nowt wrong with listening to pink ffloyd, stoned or straight!
carole x
The effects you will have from the Sativex will depend on the doseage,time of day you use it,other drugs you take,external factors affecting you,ie the weather etc. It shouldn’t get you high,but factor in all of the above and whoooooooooo knows
Wb
l have been using it for 2yrs - prescribed by my GP [with neuros agreement] - l have found it very helpful - BUT to my dismay - the senior partners at my medical centre have decided to stop me having it - PCT do not allow it. This is Coventry and Warwickshire Area Prescribing Commitee. So l have the Neuros go ahead and my GP - now they have stopped me.
This med is the only thing that has helped with muscle spasticity and spasms - without any side effects. lt does not make you feel ‘high’ as that part has been removed - so sorry - no euphoria.
l have found out from another GP - different practise - that as l am already taking it - 2yrs since it was first licensed for ms us - that l should have the option to continue until l or my Consultant consider it appropiate to stop. Also on the Drug Positioning Statement it says -‘No withdrawal syndrome was evident from the withdrawal study - but worsening of spasicity and functional ability were seen with withdrawal of Sativex’. So that shows it really does work!!!
l am now trying to change GP’s - but l need to find one that agrees with this policy and does not just ignore it and ride roughshod over it.
l tried Baclofen and Tizanidine - and they both left me unable to function - l would be sat all day in a wheelchair if l was still taking that kind of med!!!
l also take LDN - which has made such a big difference to my life - and with Sativex - seemed to be the best cocktail to keep me up and about - good sleep - and less fatigue and better mobility. l have had SPMS for 30yrs - so l think l ought to know what works best for me by now.
So l hope all goes well with you getting it.
Frances.
Hi Richard
I would like to try this and see if it can get me walking again. Only thing is I listen to Pink Floyd and Black Sabbath without anything so where would I go next!!!
Good luck
Yvonne
now we are into my area of expertiese. Until very resantly i was a self conffesed stonner and have done a breif stint workin in horticulpture so my knoledge on this subject is good. Tetro-hydro-calabino (THC for short.) is the active ingridant in cannabis and for medical use they geneticly break it down removing the first 2 wich dumbs down the whole spaced out fealing and removes the paranoia side of things leaving it as a strong and effective pain killer. The worst that SHOULD happen is sleapyness
ive been spraying for a few months now and it doesnt make me spaced out, but does help me sleep at night. it has greatly reduced spasms, pain and tremour , not to mention a vast improvement in the bladder department (no neeed to catheterise anymore yippee!) but i have had no improvement walking although i know someone it has helped get back on their feet.
pink floyd are brill anyway and comfortably numb is now my theme tune.
good luck to you and keep us all informed. i dont know how easy it is to get in germany, but it sure aint here unless you get it private. x
Hi, I dont’t care what the company or anyone else says about it, sativex makes me “high”, how “high” depends how much I take, when I take it, if I have it with food etc… For this reason I can’t take it when I am working or driving or even going out. It takes the edge of my stiffness and if my legs are tight it helps that too. I don’t know why it makes me “high”, I’m quite small but not that small, I do like to chat, giggle, joke and make little witty remarks, and sativex amplifies all these things in a way that makes me “high”. My husband says something and normally I’d give a “normal” reply but when ive had sativex I just can’t help a (what I think) is a witty reply even if the original comment was not in the least funny! I also giggle uncontrollably! Cheryl:-)
Hi, my PCT will not prescribe it due to cost so I am buying cannabis in a desperate attempt to try and lesson the spasms and pain. A friend rolls them for me because my fingers no longer work. Only started using it one week ago, small amounts to start with. I do get a giggling fit when I’ve had a spliff and it has improved my sleep considerably. I am hoping it will lesson the leg spasms (they are so unbelieveably painful) that I am prepared to break the law. I feel I am being forced to break the law because the NHS is so unfair - depending where you live you get the treatment or you get nothing at all. How can that be fair??? If it works I will be prepared to go to prison to carry on buying it. Twenty first century Briton - shame on you.
Hi, my PCT will not prescribe it due to cost so I am buying cannabis in a desperate attempt to try and lesson the spasms and pain. A friend rolls them for me because my fingers no longer work. Only started using it one week ago, small amounts to start with. I do get a giggling fit when I’ve had a spliff and it has improved my sleep considerably. I am hoping it will lesson the leg spasms (they are so unbelieveably painful) that I am prepared to break the law. I feel I am being forced to break the law because the NHS is so unfair - depending where you live you get the treatment or you get nothing at all. How can that be fair??? If it works I will be prepared to go to prison to carry on buying it. Twenty first century Briton - shame on you.
Sativex will not get anyone ‘high’. The THC is taken out of the cannabis. That is the part that will produce a ‘high’.
In the USA and Canada I think or though I cannot be sure, there are now stores where if you have an illness like MS, certain cancers… the sufferer can get medicinal cannabis. This is the real deal. Excuse the pun.
Why the MS society does not lobby Parliament for something similar for the 100,000 sufferers in the UK I will never know. Well I do, but if I told you I would be banned from using this site.
The police do not bother with cannabis where I live as it is so everyday it is not an issue at all. And there is no jury in the land that would prosecute a user if they had MS. There are numerous websites that instruct how to grow quality weed. I do not do this myself, although I never condone any drug use. A bit off topic but if we supplied heroin to all addicts, petty crime would cease overnight. No politician will ever say this outright even though they know the real truth.
So keep taking the sativex, and if it produces some placebo effect of being high… good luck. Although just as Emmerdale is not real, so is the so called high from taking sativex.
Dear all
Many, many thanks for your helpful and interesting comments. The first package arrived yesterday evening, so I will be embarking on the Savitex journey today. I will keep you posted with the developments.
On the subject of the Floyd - what a fantastic opening ceremony for the Olympics - Roger and Dave must have been proud to hear ‘Eclipse’ ringing out just after lighting the big torch! Not sure if the Queen would have been happy with the Sex Pistols though!!
Thanks again and have a great weekend.
Richard
Hi Tim1971, it don’t believes it gives me a placebo effect of being “high”, i did kinda think that at first but over time the “high” has continued. I agree that it may not be the cannabis but something in “sativex” makes me “high”. Must admit though, haven’t found anyone else on here that says it makes them “high”. Cheryl:-)
I was on the trial about ten years ago and too much definately makes you high. You are not supposed to drive when taking the stuff and that has to be for a good reason.
Hi Whammel, I agree about not driving when taking it, I work and need to drive there so can not take it when I’m going to work. I have to also think about once I get home, if I have to drive again later on that day, and if I do, I don’t take it until know I am in and no going out again. Cheryl:-)
[quote=“Upytupy”] Hi Tim1971, it don’t believes it gives me a placebo effect of being “high”, i did kinda think that at first but over time the “high” has continued. I agree that it may not be the cannabis but something in “sativex” makes me “high”. Must admit though, haven’t found anyone else on here that says it makes them “high”. Cheryl:-) [/quote] I’ve been on it for a few days now and I swear I recognise this feeling from when I was a youngun… As Cheryl says, it depends on how much, when and what with I take it with but for sure, I seem to have little funny episodes when my misses does something silly and other little moments that I recognise myself doing only when I used to get high I thought it might be placebo at first due to the taste reminding me of bong water but I can definitely feel the difference between me before a few sprays and after, not baked but undeniably a little spaced My misses says that she can see from my eyes that I look a little high but only in the evenings after a full day of sprays… My misses knows what I look like better than the mirror does so I believe her (which consequently makes me higher!) 
Not to mention that I’m going up and down stairs much better now and no spasms in the night to wake me up so my general mood is much much better (maybe the extra sleep helps there) This could be the sativex talking but maybe I shouldn’t be saying that it gets me high just in case they ban it for making people feel nice as well as making them hurt less and be more able? I came to this post after searching for “does sativex make you high?” There’s some interesting results, I’m off to read some more…
I phoned and left a message for my MS Nurse about this very thing yesterday. I’m waiting for her to call me back. I’m up to 80mg Baclofen per day and it only helps slightly. It leaves me so wiped out that I can hardly function. I can’t write or even hold a pen now and at night the stiffness and spasms in my foot make sleep very difficult. My GP has already agreed it as long as I get the go ahead from the hospital. Fingers crossed.
JZ
Hi JZ, re the baclofen. A friend of mine had a bacloen pump fitted last summer. She felt her oral intake wasnt helping. She is delighted with the pump.
Ever thought about it yourself?
pollx
Hi Poll
I’ve read about it and it terrified me. Not good with surgical stuff. I’m pushing for Sativex. If that doesn’t work I’ll keep taking the pills. Thanks for the suggestion though.
JZ
[quote=“JakeZander”]
I phoned and left a message for my MS Nurse about this very thing yesterday. I’m waiting for her to call me back. I’m up to 80mg Baclofen per day and it only helps slightly. It leaves me so wiped out that I can hardly function. I can’t write or even hold a pen now and at night the stiffness and spasms in my foot make sleep very difficult. My GP has already agreed it as long as I get the go ahead from the hospital. Fingers crossed.
JZ
[/quote] I was on baclofen but it made me too brain dead. I went on to tizanidine but that made me too drowsy , I still take one at night though. My neuro said to try and find a balance between the two , perhaps I had too many sprays too early and that’s why I got high. It’s still early so I have plenty of time to find the sweet spot. Good luck with your GP, it’s early but I definitely feel some benefit in my leg and I am moving around better.