hi all
i havnt been on for a while for various reasons so thought it was about time i updated on my sativex experience and ask for other peoples experiences.
ive been on it for about 7 weeks now and am finding it very benefitional for spasms and pain, but was not expecting any benefit bladder and bowel wise so it came as a nice suprise to find i no longer need to self catheterise as there is such a tiny amount of pee left in my bladder its not worth the previous 5 x a day ritual. woohoo!
bowels are also emptying pretty much every 1 to 3 days, a damned massive improvement on once a fortnight (ouch!). mind you i am eating baked beans an awful lot cos they are cheep and sativex has eaten away at what little money i have.
i have cut down to 1 sleeping tablet a night instead of 2 and sleep on the whole soundly for 7 hours, maybe because i no longer need to get up to pee several times a night. or is it the lack of spasms.
the tremor on standing has reduceddramatically which everyone has noticed.
but a few nights ago i did wake up with a horrid prickling going on all over my body which lasted 3 days then went as quickly as it came.i did redce the dose back down to 4 sprays just in case that was the course.
has anyone else found unexpected benefits/drawbacks?
x
hi zelda,
i can’t answer your question but thank you for this post. my legs are causing me problems and i’m seeing my neuro on thursday and might ask him about it.
i’d be delighted with fewer leg problems but if bladder and bowels get sorted too i’ll be chuffed to bits.
carole xxx
[quote=zelda]
hi all
i havnt been on for a while for various reasons so thought it was about time i updated on my sativex experience and ask for other peoples experiences.
ive been on it for about 7 weeks now and am finding it very benefitional for spasms and pain, but was not expecting any benefit bladder and bowel wise so it came as a nice suprise to find i no longer need to self catheterise as there is such a tiny amount of pee left in my bladder its not worth the previous 5 x a day ritual. woohoo!
bowels are also emptying pretty much every 1 to 3 days, a damned massive improvement on once a fortnight (ouch!). mind you i am eating baked beans an awful lot cos they are cheep and sativex has eaten away at what little money i have.
i have cut down to 1 sleeping tablet a night instead of 2 and sleep on the whole soundly for 7 hours, maybe because i no longer need to get up to pee several times a night. or is it the lack of spasms.
the tremor on standing has reduceddramatically which everyone has noticed.
but a few nights ago i did wake up with a horrid prickling going on all over my body which lasted 3 days then went as quickly as it came.i did redce the dose back down to 4 sprays just in case that was the course.
has anyone else found unexpected benefits/drawbacks?
x
[/quote
Hi Janet, great to hear of the benefits you are getting with the Sativex. Hope you dont mind me asking this, but do you ever feel whoosy, as if you are a bit high? As someone else here said thats how it affects her, so she only has 1 or 2 squirts a day.
luv Pollx
Hello Janet I am very interested in the Sativex spray, I am going to look into it on the web but would you mind advising me how to obtain it, can you get it funded? and how much is it a month? I’d be very greatfull
[quote=“carole58”]
hi zelda,
i can’t answer your question but thank you for this post. my legs are causing me problems and i’m seeing my neuro on thursday and might ask him about it.
i’d be delighted with fewer leg problems but if bladder and bowels get sorted too i’ll be chuffed to bits.
carole xxx
[/quote] hi carole
have you tried other meds such as baclofen, tizanadine and pregabalin? the chances of getting sativex on the nhs is pretty slim but its worth asking as some areas seem to prescribe but most dont. my rehab doc was willing to prescribe it but the pct refused to fund it, so she agreed to write me a private script eventually. i have to assume its the sativex helping my bladder and bowels as things have improved since taking it. thats why i wanted other users feedback to see if the same has happened to anyone else. good luck with your neuro.
x
[quote=“MS43”]
[quote=zelda]
hi all
i havnt been on for a while for various reasons so thought it was about time i updated on my sativex experience and ask for other peoples experiences.
ive been on it for about 7 weeks now and am finding it very benefitional for spasms and pain, but was not expecting any benefit bladder and bowel wise so it came as a nice suprise to find i no longer need to self catheterise as there is such a tiny amount of pee left in my bladder its not worth the previous 5 x a day ritual. woohoo!
bowels are also emptying pretty much every 1 to 3 days, a damned massive improvement on once a fortnight (ouch!). mind you i am eating baked beans an awful lot cos they are cheep and sativex has eaten away at what little money i have.
i have cut down to 1 sleeping tablet a night instead of 2 and sleep on the whole soundly for 7 hours, maybe because i no longer need to get up to pee several times a night. or is it the lack of spasms.
the tremor on standing has reduceddramatically which everyone has noticed.
but a few nights ago i did wake up with a horrid prickling going on all over my body which lasted 3 days then went as quickly as it came.i did redce the dose back down to 4 sprays just in case that was the course.
has anyone else found unexpected benefits/drawbacks?
x
[/quote
Hi Janet, great to hear of the benefits you are getting with the Sativex. Hope you dont mind me asking this, but do you ever feel whoosy, as if you are a bit high? As someone else here said thats how it affects her, so she only has 1 or 2 squirts a day.
luv Pollx
[/quote] hi poll lovely to hear from you.
i dont exactly feel whoosy but do feel a bit spaced out and clumsy when taking it during the day. perhaps drowsy is the best way to describe it. i have landed on the floor today when taking what few steps i can still take. luckily i had company to get me back up. it hurt like hell in my back and legs when i hit the floor but for a change i didnt panic and after a lay down the pains gone. hey ho what fun.
x
[quote=“lou-lou”]
Hello Janet I am very interested in the Sativex spray, I am going to look into it on the web but would you mind advising me how to obtain it, can you get it funded? and how much is it a month? I’d be very greatfull
[/quote] hi lou lou
i cant get it funded so got a private script eventually. it cost me 450 for 3 vials which i got from my docs dispencing chemist. you can get it cheaper from dicksons in glasgow but your script has to be written out in a pecific way, which mine wasnt. it depends how many sprays you take a day as to how long it will last you. there are 90 sprays per vial so if you had 3 sprays per day a script could last for 3 months.good luck on your quest, i certainly feel better for it but do begrudge having to pay for it when its licenced for ms.
x
Hi Zelda, glad you got your Sativex and it is working so well for you. I haven’t felt improvements anything like what you describe but I didn’t have a problem with some of these things in the first place. It takes the edge off my stiffness and the tight feeling out of my legs. Another thing is that sometimes it works better than others,strange isn’t it? I’m not quite sure why. Poll, it was me who said it made me high and it still does, so I just take 1 or 2 sprays a day. Don’t know why I am high on it but I am on the smallish side, so maybe it is more concentrated in me than in someone bigger. I am also quite a giggly person and I like little jokes and witty comments and the Sativex just exemplifies that too. You don’t know me, but if you did, you might understand where I am coming from with this statement. Anyway it sounds like it is working brilliantly for you, long may it continue. Cheryl:-)
Hi Zelda,
Been on Satavex now for more than 6 months now,and yes it has made a diffrence.
But you seem to be getting more out of it than i am,yes it has helped with the spams in my leg and to some degree with the pain.
But it has done nothing for my bladder or bowel.
I take 12 sprays a day,and dont think it makes me high.[Cheryl is just a slip of a girl so it may make her high].
It could be that i was taking my avatar before, so was already use to it.
The only two bad thing is the taste,why cant they add somthing to it, and a dry mouth.
I am lucky here in Fife i managed to get it on prescription,not sure if i could afford it other wise.Had a very good Nuro that was pushing PCT hard,for that i am gratfull.
Keep banging the drum that the MS society should be fighting more to end this postcode lottery.
Just a pity that not everone is being allowed to try it.
Good luck to anyone that is fighting for it.
Take Care.
Chris.
[quote=“Upytupy”] Hi Zelda, glad you got your Sativex and it is working so well for you. I haven’t felt improvements anything like what you describe but I didn’t have a problem with some of these things in the first place. It takes the edge off my stiffness and the tight feeling out of my legs. Another thing is that sometimes it works better than others,strange isn’t it? I’m not quite sure why. Poll, it was me who said it made me high and it still does, so I just take 1 or 2 sprays a day. Don’t know why I am high on it but I am on the smallish side, so maybe it is more concentrated in me than in someone bigger. I am also quite a giggly person and I like little jokes and witty comments and the Sativex just exemplifies that too. You don’t know me, but if you did, you might understand where I am coming from with this statement. Anyway it sounds like it is working brilliantly for you, long may it continue. Cheryl:-) [/quote] hi cheryl i am hoping the benefits continue as catheterising was getting very difficult due to my sight probs and tremours. ms is a strange illness isnt it. my next step is to try without antibiotics but im not going to rush into that one. x
[quote=“chriskerr”]
Hi Zelda,
Been on Satavex now for more than 6 months now,and yes it has made a diffrence.
But you seem to be getting more out of it than i am,yes it has helped with the spams in my leg and to some degree with the pain.
But it has done nothing for my bladder or bowel.
I take 12 sprays a day,and dont think it makes me high.[Cheryl is just a slip of a girl so it may make her high].
It could be that i was taking my avatar before, so was already use to it.
The only two bad thing is the taste,why cant they add somthing to it, and a dry mouth.
I am lucky here in Fife i managed to get it on prescription,not sure if i could afford it other wise.Had a very good Nuro that was pushing PCT hard,for that i am gratfull.
Keep banging the drum that the MS society should be fighting more to end this postcode lottery.
Just a pity that not everone is being allowed to try it.
Good luck to anyone that is fighting for it.
Take Care.
Chris.
[/quote] hi chris thanks for your reply. yes it does taste yuk but doesnt give me a dry mouth. may i ask how many vials you get per script cos according to my maths 3 vials if taking 9 sprays a day would last 28 days. 12 wouldnt. i am pretty thick maths wise so do correct me if im wrong, i would be like a door mouse if i took that many sprays a day! x