Hi Chris, the effect is pretty instant to be honest!! Not like waiting for the prescription drugs to kick in, it’s almost immediate. I have swallowing difficulties & it doesn’t bother that. It needs to be dry to be ground. Don’t worry about talking about anything on here Chris, you will find everyone will be open about everything! The nicotine is the addictive substance in the tobacco, I used to be on 3mg in my vape juice, I have nicotine free now, with my special additive! My MS has been more of a slow decline really, RRMS at 1st, now SPMS, it’s the bloody nerve pains that have been the most disabling to be honest, can cope with the other things but not this. Son in law devised this method of taking cannabis, very effective! Anything else you need to know Chris, fire away!! Tracey x
Thanks Tracey, I think that’s just it … my prescription drugs don’t seem to be kicking in! I’ve got nothing against them, but they just don’t seem to cut the mustard! I never take high doses, although I would have I’m sure, if they’d shown any signs they were going to work. Sometimes it actually seems as though they make things worse … pre-gabalin fine … post-gabalin not so sure!!! They all make you tired I’m sure, so they ought to prescribe something like cannabis … to perk you up enough to get a few things done!
I think what you’re taking now, is about what I’ll be hoping to try. I don’t think the ‘vaping’ would be a problem. Either that method, or the edibles! It’s hard to believe they have Medical Marijuana chemists in America now (some states!) & here we have Sativex - made here, legal in lots of countries, licensed in the UK, available in Wales … but not in England … Weird! Chris x
l have Sativex on repeat prescription - have done for about 5yrs. And that is in UK.
Savinex isn’t half as good as the real thing Chris, no where near. Do it yourself hun, if you need anymore advice, pm me, nowt I haven’t tried, things you do in pain eh!!! Tracey xx
Interesting reading about Sativex on the MS Society website. Has anyone put in for an individual funding request at their local NHS trust?
" Can I get Sativex?
In 2014 the National Institute for Health and Care Excellence (NICE), who recommend which drugs can be available on the NHS, decided Sativex didn’t give people enough benefit to justify the cost. Because of this, Sativex hasn’t been available since then on the NHS in England, Scotland and Northern Ireland. Sativex is available on the NHS in Wales if your spasticity is ‘moderate’ to ‘severe’.
Your MS specialist might be able to help you get this drug by helping you put in an ‘individual funding request’ to your local NHS Trust. These applications may be turned down. If you can pay the cost yourself, a private prescription is around £500 a month. Faced with these barriers some people with MS buy cannabis illegally. "
I live in Wales Chris, they would rather perform a risky operation than provide me with Savinex, very hard to be prescribed to be honest, because i’m under Liverpool & Chester (England) they won’t give it me, do it yourself so to speak. Tracey xx
I was wondering about that Tracey … funny how it sometimes seems like people live just around the corner! I’m in the midlands!
At one point I was thinking - I’ll try to get a private prescription for Sativex, & pay the £500 for a trial month - but It would only be for while I’m trying to work out what’s best re the natural stuff … like the song says … Aint nothin like the real thing - hopefully that’s true!
I’ve not read many reports saying Sativex is the answer - more that it slightly eases pain and spasticity. That’s fair enough, but I like that you say yours is pretty much instant Tracey! I’ll do a pm over the next few days, if that’s ok?. I’m finding rrms quite fascinating to learn about … on another thread, one chap said he had an attack about 46 yrs ago, was diagnosed 44 yrs ago, and despite a separate terrible incident, has had no further relapses since! I’m confused as to whether rrms, can progress to spms, and then eventually to ppms?
spacejacket didn’t say … are you in Wales yourself or did you have to prove your worthiness so to speak, for Sativex? Could I ask, how you have found Sativex over those five years?
Hi Chris, I’m in North Wales, yes pm me anytime Chris. I was RRMS, pretty well controlled until 3 years ago when the bloody nerve pain kicked in, everything started going t**s up then! Doesn’t always progress Chris, luck of the draw really, I lost!! Anyway it is how it is nowadays, hence my ‘naughty’ habit. The pain is unbearable sometimes, like someone’s lit a fire under my feet, horrible. The green stuff takes it away, only way I can sleep. I can understand how sleep deprivation was used as a torture, can’t function properly anyway, just makes everything so much worse. I wont be giving it up anytime soon. Tracey x
love this discussion.
i indulged in the illegal stuff back in the day. (late 70’s to early 80’s)
since ms pain showed it’s ugly head, i am offered an occasional toke but i’m desperately trying to stop smoking.
vaping seems to be the best bet.
or mixing into food.
Chris, l live - Worcs. And l am PPMS. Which means that my MS has always been with me since it started 35yrs ago. No remissions. RRMS does eventually become SPMS -in most cases. Some people have only one ‘attack’ of MS - then might never have another relapse. My GP told me this is why doctors often do not want to tell their patient they have MS - in the hopes it might not rear it’s ugly head again - and the stress and anxiety from knowing you have MS could make it worse. PPMS and RRMS are like two different diseases - but still auto-immune. And most of us suffer with other problems that are auto-immune. Arthritis/Osteo-porosis/Rheumatoid A/ Crohns/Coeliac/ME/Parkinsons/Psoriasis/ lBS/ and many types of cancer.
l find the Sativex helpful at bedtime - helps me relax. Sativex has CBD and THC in it. l do also have cbd brothers ‘white oil’ and the purple paste - both legal. Have been looking at ordering some ‘hemp tea’ - again legal.
To qualify for Sativex - the criteria was that you had to have tried and failed with Baclofen and Tizanidine - which is what happened to me. Both of these meds had me unable to stand - could not function at all. Certainly not drive a car. Since then l found out that they both actually damage muscles when used long term. My prescription of Sativex lasts me over 2 months.
So l try to keep it ‘natural’. No other meds or painkillers. l just follow ‘Coimbra Vitamin D Protocol for MS and Auto-immune Disorders.’[ facebook group] …the nemesis of Big Pharma - as thousands of people have improved their health and stopped taking prescribed drugs - thus saving their health insurance companies and nhs a fortune.
PS. lf l could not get Sativex on prescription - l would rather spend the money ‘on the real thing’ baby!
And l have far less pain/spasms now that l am taking high dose vitd/magnesium malate/glycinate/lonic magnesium chloride/B2 /B12/ Turmeric/ omega 3 and probiotic [kefir]. No brain fog - better balance. Took about 6 months before l felt it working - and l actually felt worse at times - but l am glad l stuck with it.
Hi spacejacket and carole - it is a good discussion!
Wow, many thanks for your excellent reply sj and blimey … you are doing really well! You know how you look back and can predate the start of your MS to much earlier? … at the very earliest I could only say around ten years ago for minor symptoms, then the real deal kicked in about six years ago … now, with the rate of progression as it is, well it sometimes feels as though I should get everything in order, if you know what I mean? You have a good clear thinking brain, and are a good representative of MS- not necessarily being impossible to live with for many years … and many more to come!
So, for that reason, it is worth looking into the drugs prescribed and considering other options and herbal relievers! I’ve actually had an anonymous, through the letterbox delivery of the herb itself - I’m not sure I’ll be using that yet though, as I won’t be able to smoke it! Tracey’s given me the ‘how to’ re vaping which looks to be the way. I’m pretty useless though and could do with it being available as a whole kit/package on ebay etc!
I’m not sure I’d qualify then for Sativex - I’ve been on baclofen from the beginning - 2 or 3 years before dx. I believed that was one of the safer drugs, tried and tested over decades etc - but then I saw someone mention that baclofen and ibuprofen was a ‘suicidal’ combination … so I’ve started to reduce the ibuprofen already! A few years ago, my neurologist prescribed tizanidine, however my gp wouldn’t follow that through, saying you have to come from hospital, having already had a course of the drug … Maybe not a bad thing! So I’ve just been on baclofen and pregabalin for the neuralgia. Tried gabapentin but that wasn’t good atl - none of them seem to really help but by the time you work that out, you get a bit scared to stop taking them!
I may be rambling now so, if ok, could I get back to you re some of the other natural stuff?! chris
Sorry about that … my fault I think!
Hi i am new to this so hope I don’t rabble on too much.
i have RRMS I was diagnosed over 6 years ago and to be honest it’s been the worst 6 years of my life.
At the moment I don’t want to go on and bore everyone with all my problems , I am just looking for advice in CBD oil.
i have it ready to try, I will be eating it on a cracker or something as I have been told it tastes horrible. As u can imagine it is illegal but I am a bit scared as I know they say you don’t get the high feeling as that has been taken out when it has been soaked when preparing the oil but I am a big woose and would like to know if there are going to be any strange feelings that you get maybe just till you get used to it or am I panicking over nothing.
i really want to try this as I am on morphine constantly along with other painkillers and it’s taking over my life, I need to get off these tablets as they just keep having to put the strength up all the time as my body is getting so used to them.
any info would be appreciated
Thank you for putting my mind at rest will try it in the next few nights and let you know the outcome. As I said this is the first time I have joined a forum never expected to hear from anyone so quickly.
I’ve been using the purple paste and it’s vile, but for me, it gives me a great nights sleep so worth it for that alone. Will try the oil next time.
There’s always someone lurking around here and you usually don’t have to wait too long for a response.
CBD oil is not an illegal substance - so you can relax - just take it. l have the purple paste -l just squeeze a small amount about the size of a grain of long rice onto a piece of rice paper - and pop it under my tongue. lt dissolves quickly - and the rice paper helps with the taste , which l do not mind at all. The rice paper works well with the drops of oil as well.
I haven’t personally used CBD, but a friend of mine who is suffering from breast cancer has found it a great source of pain relief. I live in Merseyside and I remember walking past a health food shop the other week that had a huge CBD poster. I cant remember the name at the moment. I will have to check and get back to you. I think they had a deal on.
Edit - I remembered the name of the place and went in to buy some CBD oil, the shop is called Heath Rack. They are located on Lord Street in Southport! This is their website - https://www.healthrack.co.uk/
Hi All, I have been using 10% CBD oil from Ammalife for about a month now, and can say it is great for pain. I cannot use any products with THC:( due to being subject to urinalysis testing at work. Does anyone know if there is a cannabidiol(no THC) available on NHS prescription? The Ammalife product works well, but it’s expensive. The ammalife products contain .0.2% THC. What is the content of the CBD Brothers purple paste? I could not the information on the website, but am interested as it is less expensive than Ammalife. Thanks.
Hi, i have just registered to ask you a question regarding your post, i dont have ms but i am suffering very badly from anxiety/stress/migraines and i have been trying cbd oil recently, budget one from Holland & Barrett, i might have to spend quite a bit of money and get the cbd brothers ones.
The point of me replying to your post is since you asked the question about can you get cbd oil on the NHS, have you tried? gotton any more new info on it?
I went to my Doctor today to try and persuade her to try and help me get CBD oil on the NHS, she didn’t even know what CBD oil was, it was infuriating and incredibly irritating that a medical professional hasn’t heard of such a medicinal supplemt that is helping alot of people!!!
So any news/help you or anybody else has on the forum about getting CBD oil on the NHS please get in touch, i really am desperate, i would rather be getting actual cannabis but i don’t know how to get it, don’t know anyone that uses it, so im stuck really, any help would be so greatley appreciated.