Hi all
I haven't posted for ages and my lovely Mother who has CBD in her 7th year. We are all battling on with her and I am thinking about trying cannabis oil to relieve stiffness etc. I see Holland and Barrett have started selling it and I am wondering whether to try this or maybe try to get it online. This looks to be a minefield though. The other option is to try her neurologist to see if we can get it on prescription but we don't see him for 3 months. Has anyone got any advice?
Thanks
Mx
There have been many folks here who have reported good results from it. I have a friend who swears by it for her arthritis. I can't see any harm in trying! If you do try it, please let us know the results.
Love and peace,
Ec
I’ve wondered about it myself. They just opened two store in Pennsylvania near us that sells it. Larry’s got pains and stiffness. Have to ask his primary doctor if it would be of any benefit. He hallucinated on over the counter cough syrup 3 years ago. Every drug I give him I wonder if it will cause hallucinations.
It doesn't have THC in it so he may not have any "stoned" effects....
Hi Jeff
There are some very strong weird chems in cough syrup. Many years ago I knew a student who loved the stuff for getting high.
CBD oil should not cause hallucinations. In cannabis it is the THC which can do that, but it takes a lot to do that even then.
I speak of someone who has been involved as an NHS practitioner for many years dealing day in and day out with Cannabis issues and psychoses. I've had full on training from my patients, some of whom were dealers as well as having studied the clinical info.
Were you to be talking over the counter Cannabis (THC and CBD) I would say try to find a product which is more in balance. Tell them you don't want any hybrids with heavily enhanced THC.
Then start off at a low dose initially. Then if that's OK increase it weekly until you find you are getting best results. If you go too far the good results diminish.
If you are getting any issues whatsoever - just stop immediately. Cannabis is not addictive and there will be no withdrawal symptoms.
The same holds for CBD oil only.
Hope this helps a little.
It does help thanks. It’s a thought I had when it got mentioned here. He has neck pain which is part of the disease. He’s had chronic back pain all his life.
Hi Martina
Those Holland and Barratt prices are crazy high. H&B prices generally are and their products aren't always that good either. They can be relied upon to be expensive rather than good.
Their Jacob Hooy product is only 2.75% which means that to get 1mg a day you would need to ingest a whole bottle each day!
So instead of H&B's £30.00 / mg you can get it at around 10p/mg from what appear to be sound, UK based online specialist vendors.
Do you know what dosage you are looking for?
This might be useful for you.
hempura.co.uk/how-much-cbd-...
Do come back and tell us if you try it.
Kevin
x
I knew you would have an answer Kevin.....always can depend on you for words of wisdom!!!!
Hi Andrea
I'm just beginning to look into this.
I am so grateful for Martina's post and the other one the other week.
There are two potential benefits I have found so far. The first is appetite stimulation and the second is getting muscles to relax.
The great thing is that CBD does not give a high. So the user is clear minded.
Still reading.
I am going to appoint myself as a guinea pig and try it out and if it's as above Liz is going to try it. (We discussed it this afternoon).
If you see a few odd posts from me in a weeks time about the importance of feeding faeries and such ... Please bear with me 
Kevin
xx
No excuses for you in faerie-land , Kevin, if no thc, right?
But seriously, thanks for experimenting for us!!
Hi again Martina and anyone?
I have been reading more and there is a huge difference in its effectiveness and how it is produced. So buying a quality product is important.
It is now legal in the UK from licensed suppliers for personal use.
But, has anyone tried it for PSP /CBD and can comment?
Does anyone have any links for its use for PSP/ CBD?
Maybe we will suck it and see.
I'll ask Liz when I see her today.
Thanks
Kevin
I used to smoke pot when I was a kid . Whether it was a coincidence or a deterrent, I do not know, but I did not start getting seizures until after I stopped using . Because it was illegal, and I was a mom that did not want to be stoned all the time, I never pursued pot as as an antiseizure med.....still haven't, tho I have been thinking about it....
This post sounds like I'm stoned sorry.....
Chuckles
I too used it as a kid. 
Not hugely though - My head was out to lunch without it
There's two families of 'drug' in Cannabis.
THC which gives the high and CBD which is the muscle relaxant.
So CBD should not get one 'stoned'.
I'm going to try and put a post together based on what I'm finding.
Hey, if you see a dodgy Brit on your street corner with a big shoulder bag and dark glasses... I only take cash right?
Waiving
Kevin
xx
Hahahaha If I see a dodgy Brit with dark sunclasses...I'm gonna think theres maybe some Rolling Stones comin to pay our lil college town a visit....I'l be in line.....
If we put our collective heads together on this Kevin we could reach a decision on the best way to go with our loved ones! So we want an oil with a reasonable % of CBD although some THC probably wouldn't harm either to be honest! I am not sure what a reasonable % of CBD is though, I have found 4% - 20% so far seems to be a reasonable amount. I am wondering if anyone in the UK has had their neurologist successfully prescribe cannabis oil on the NHS? It is quite expensive to buy and Holland and Barrett one doesn't look strong enough...
Hi Martina
I so believe in the collective head thing.
Yes, I think carers should be permitted some THC Chuckles
First off a very big thank you for your posts and motivating me to explore this.
We are seeing a neurologist in about ten days time and I am going to ask him about this. I'll come back and post his reply.
Holland and Barratt are having a laugh with their very diluted product and its extraordinarily high price. I've seen them do this many times before with other products. They are a most cynical commercial outlet. Who market on the basis that people don't read labels and work percentages out.
Please check out the calculation I did on the real amount of CBD in H&B's product in a reply below.
Percentages are not helpful here milligrams are - Which is why our meds. from the pharmacy always state mg's per dose.
I'm going to do a fuller reply to your post below.
Let's all of us keep on trying to get a handle on this. There are some great posts on this thread already.
Thanks Kevin it does look to be a minefield on the internet. I looked at the website you suggested and it looks to be a credible site. The other one I thought looked credible was GWPharma.com who produce Sativex. It looks like NICE have not authorised for it to be prescribed as it is very expensive except in exceptional circumstances and only by specialist neurologists. I am wondering if PSP/CBD conditions would fit the criteria for a prescription?
I am not sure how I would approach this with my lovely Mother as I would imagine that is I suggest her trying cannabis would be met with shock horror lol! I would need to think very carefully about how I broach it methinks!
If anyone has any experience of buying and using cannabis oil and its effects I would be very grateful for views,
Many thanks
Mx
Hi again!
I've been putting a post together for three hours!
I'm only two thirds of the way through, but I need to go and see Liz now.
It starts with the "why use it' and 'how it works' and goes on through choosing a product and possible dosages.
And a lot more.
All backed up with informative links.
Right now I am struggling with CBD dosage... anyone got any info on that please? Possibly a link?
I will do a post when I complete this. It will not be authoritative - just the best I could do and any corrections will be gratefully received!
Best
Kevin
Sorry about the last post - the rest just fell together.
--------------------------------------------------------------------
Hi again!
OK - I'm going to try and take this from the top. I need to do so much more reading yet, but the following seems sound.
I am not recommending CBD in any way - I'm just putting forward some information.
CBD and Cannabis:
Cannabis generally contains two families of active substances. THC and CBD. The THC group is what gets folk high and the CBD group are appetite simulators and muscle relaxants. In fact they are supposed to replace the short fall in dopamine in the brain and so do more than this in terms of the nerve / muscle nexus.
Thus CBD is not cannabis and it will not get folk high. One might consider it to be akin to an alcohol free wine or beer and the thought of the latter sends shudders through me.
CBD is legal in the U.K. if bought from licensed outlets. Street cannabis, of course is not.
PSP/CBD are closely associated to Parkinson's and Alzheimer's
So I am going to cite works on the benefit of CBD for those illnesses. This is my first big assumption.
Here is an article explaining the action and possible advantages of CBD and Parkinson's.
projectcbd.org/science/cann...
Here is a cautious article on Cannabis and its potential in Alzheimer's
alzheimers.net/6-15-15-effe...
Reading the last article I dug a bit further and found that it is actually the THC in Cannabis which is likely to be of the greatest benefit to the Alzheimer group.
alzheimers.net/6-15-15-effe...
So, with PSP and CBD both THC might be efficacious. Whereas for Parkinson's it is the CBD which is the required component.
Not all natural cannabis types are equal
Some varieties of the plant are naturally higher in THC and others CBD. 'Sativa' is higher in THC and 'Indica' in CBD.
leafscience.com/2017/10/16/...
I have been unable to find a typical THC level for Sativa. However because the oil in the plant is volatile length of storage can play a big role in lower levels of both and also the growing conditions. The more sunlight the stronger.
A word of caution: A lot of street cannabis is a cross between the two and they are bred for high levels of THC. 'Skunk' a street name for one product can have up to 18% THC - I regard this as dangerous as it can trigger psychotic episodes. And of course it is illegal in the U.K.
So I am sticking with what is legal in the U.K. CBD.
Types of CBD oil and effectiveness.
cbdoilusers.com/full-spectr...
How much CBD is effective?
“Dr. Russo offers cogent advice for patients with PD and other chronic conditions who are considering cannabis therapy. “In general,” he suggests, “2.5 mg of THC is a threshold dose for most patients without prior tolerance to its effects, while 5 mg is a dose that may be clinically effective at a single administration and is generally acceptable, and 10 mg is a prominent dose, that may be too high for naïve and even some experienced subjects. These figures may be revised upward slightly if the preparation contains significant CBD content … It is always advisable to start at a very low dose and titrate upwards slowly.”
However elsewhere we find that the dose is very specific to each individual and there is a peak efficacy. Go higher than that and the efficacy decreases.
So following on from Dr Russo:
“300 mg/day of CBD significantly improved quality of life but had no positive effect on the Unified Parkinson Disease Rating Scale. (Lotan I, 2014)” This is very much on the very high side compared to other sites I have read and the following seems more in keeping with the trend.
“Finding the effective dosage for CBD oil takes a little bit of time and the understanding that there is no “one-size-fits-all” standard dose. Knowing the numerous benefits that CBD oil can have on the body should be a motivating factor in your journey to finding a dosage that helps you to get the results you are hoping for.
To give some perspective, CBD is measured in milligrams (mg), the same unit of measurement as paracetamol. A standard paracetamol tablet is 500mg, whereas a single CBD dose is of a much tinier amount. A beginner’s dose of CBD is usually as little as 6.25mg twice per day, then, from there, the dosage is slowly increased every 5-7 days until the user is happy with their results, up to a possible 25mg twice per day, and even beyond in certain cases. This is because the body requires only tiny amounts of cannabinoids to begin feeling the benefits!”
hempura.co.uk/how-much-cbd-...
This site is also useful with regard dosage. Though they are mostly referring to their product there is a handy dosage calculator link on the page:
cbdoilusers.com/cbd-oil-dos...
Last note. There is a prescribed product in the U.K. Sativex. Because it is clinically prescribed it will have to be a 'standardised' medical product. That is strength, content etc will have to be highly consistent. That means expensive! It is not a full spectrum product. MIMMS is a clincians prescribing guide - So it is very reliable.
mims.co.uk/drugs/musculoske...
Looking at it as a dosage guide:
5.2 mg per spray @ 0.1ml/ spray is a dose.
Increase to a max of 12 sprays/day - max dose 62.4 mg CBD per day.
This product at 10ml for £125.00 will deliver 100 doses. Or another way @ 10.00 mg a day it will last 10 days. (I hope I got my maths right here!)
It's only available on prescription in the U.K.
------------------------------------------------------------------------------------------------------
Well!
Something to chew on I hope.
Can anyone add or correct please?
Best to you all – I hope this is helpful.
Kevin you are such a superstar!!! I will have to read it all again as I have to get my boys from cricket but this is an amazing in depth study of cannabis oil! Thank you so much and I am going to re read it I suspect many times...I will get back to you and thank you again Mx
Thanks.
(Blushing)
Just doing my best.
I found it very helpful sorting my head out this.
A young man in his twenties on our street told me years ago we should try Liz on the full Cannabis thing.
He even offered to find some for us. (He didn't use it himself).
We never did.
I now wonder.
I would Definitely try it. I shouldn’t say this but I smoke pot but it really helps me to relax.
Hi, I posted a few days ago on the CBD oil, as I have seen a lot in different media articles, the Holland & Barrett oil is2.75% and is normally £19.99 for 10ml(it is currently £9.49 on offer ) you have to build up your dose, starting with a drop under your tongue 3 times a day, the staff in store are very helpful; supposedly good for improving spasms and joint pain helps with Parkinson’s shakes, we have been using it for 2 weeks now, and Ian has not required as many painkillers.
Amazon do a 20ml for £30 but is 5% in strength, I have heard of some companies charging £200/£300 But not sure of quality and strength. I would be hard pressed to pay that I think, but so long as it is purchased from a reputable source I think it is worth a trial
Hope this helps
Janet xx
Hi Janet
You might like to scroll up this thread. I checked out Hooland & B. It is not the volume that counts. It is the amount of CBD in that volume. H&B is very low indeed.
10ml @ 5% CBD. Equates to 0.5ml of CBD per bottle. milligrams are the proper way to see what a dosage is so I am going to be generous and give it a density the same as that of water (It will be actually considerably lower). So at 5% a 10ml bottle will have 0.5 mg CBD per bottle! So for a fairly typical dose of say 4mg per day you would need 8 of these bottles a day.
Which is probably why they are giving % rather than a proper measure of mg.
Their product is ridiculously weak and about 100 - 200 times the price of the other outlets mentioned in this thread.
I hope you don't mind me flagging this up.
Best to you
Kevin
x
Gosh, this is so hard to look into all the information, I will be following your guinea pig trial closely I won’t go running out to H&B then
Thank you for the advice
Janet x
Chuckles not H&B....
To tell you the truth I was shocked when I saw what they were selling.
The information boils down to this:
CBD oil encourages the brain to make various chemicals we need which with Parkinson's the level has deteriorated. It also does something in the gut which rebalances a different deficit.
The effect is to both ease tense muscles and perhaps even give them a little more ability and second it re-enables appetite.
There are some posters here which have found it helpful.
I'll post later after guinea pigging.
It might be some weeks.
Best
Kevin
x
Hello
My partner was prescribed Sativex, which is a medical marijuana, a spray that goes under the tongue. He got it from his GP (we are in Canada), there was some red tape to get through to actually get the RX but... made a huge difference for pain and mobility. He had been taking several other things that he was able to quit once he started this.
Joan
I think if you ask for an appt. now they could arrange it...I have heard good things about CBD and infact research has proven its antiinflammatory effects. I believe you could go through your Dr. Though I don't know UK regulations....I think we here in the US can use it without a prescription.....I say go for it!
Brilliant thank you Martina and all, and thank you Kevin, I have been looking into this myself but got very confused, so did not go ahead, I no know where and what to buy.
I am thinking about this very seriously, as Colon has a lot of pain in his ankles and heels, and sometimes his wrists. He is already on Morphine for the pain, but still complains, so I was thinking if I bought cannibis product, that could help with pain aswell as the anxiety
I will read some more then think I will order some next week if I think it could help.
I will let you know how we get on.
Thank you again for all info
Love and hugs
Helen xxxx
I am in US and am currently using CBD oil on a daily basis. I started out with 250 mg 2 x day then went up to 500 mg. It has helped with shaking but I don't believe I've hit the right dosage yet and will be Increasing to1000 mgs. I found a place here in Wisconsin. In fact they have a symposium this coming week where they will have lots of information, speakers, product available. They are also on Facebook if Anyone wants to check it out. CBD Therapeutics of Wisconsin. They are the most reasonably priced I have found. It's hemp oil and is made from the stem of the plant not the flowers so no THC. Tastes a lot like olive oil. I will be picking up lots of info so if anyone is interested I can post.
I decided to try it as the doctors here seem lost as to what to prescribe and I am open to anything that will help me in any way. Every day seems to b ring a new challenge and I am feeling very alone in this whole process.
I was born in UK, still a citizen and if I had any family left there I'd be 'home' in a heartbeat.
Thank you Martina for initiating this string, and Kevin for all your research. This is good info and I'm intrigued to see what comes out of the guinea pig trial!!
G is not rigid or in pain yet, but I SO appreciate getting tips before the crisis happens!!
Anne G.
Hi,
I think Kevin has covered all the ground, but my penny's worth.... Here in the UK I bought Ruth a Medipen for £50 - a vape pipe for just the CBD element of cannabis - hence it is legal in the UK. She quite enjoyed the experience of vaping which is relaxing in itself. But it did not help with her sleep (which was the main reason for trying it). She is not in pain (thank God!) at the moment so I cannot say if it worked for pain relief, but I believe it could possibly work for that. Having no THC in it, she did not get high.
Richard
I am going to try PROVACAN CBD OIL 500mg 'Daily' 500mg
£34.
80 sprays per bottle
Approx 6.2 mg CBD per spray
I will let you know if it helps with my stiff and painful left arm.
I will also be asking my neurologist if he will prescribe me Sativex when I see him in 3 weeks time.
Cheers,
Patrick.
Well I have tried this spray and it does seem to help with relieving my left arm stiffness. Not sure how many sprays to have, or whether I need to go all out on the dosage as my arm and hand is stiff but not rigid. I will ask my neurologist if I can do a trial of Satifex
That's great news Bargiepat.
Thanks for coming back with that.
From all of the reading I've done your looking at increasing it to about 6mg twice a day.
It varies a lot from person to person and body weight.
If you let me know the brand and strength I will calculate that up for you. Apparently too much and the efficacy decreases.
I am wincing as I write because I bet you've already done that.
Good luck with a Satifax prescription. Our neurologist told us today that no work had been done on Cannabinol and PSP and so he could not in any way endorse it. And that was us asking if we should buy it ourselves.
Best to you
Kevin
PROVACAN CBD OIL 500mg 'Daily' 500mg
80 sprays per bottle
Approx 6.2 mg CBD per spray
I have only done 1 spray......... !!!!
Just found this on the web that seems to infer that it is good for brain degeneration.
'The federal government has patented CBD. Here is what they say in their patent abstract:'
Cannabinoids have been found to have antioxidant properties, unrelated to NMDA receptor antagonism. This new found property makes cannabinoids useful in the treatment and prophylaxis of wide variety of oxidation associated diseases, such as ischemic, age-related, inflammatory and autoimmune diseases. The cannabinoids are found to have particular application as neuroprotectants, for example in limiting neurological damage following ischemic insults, such as stroke and trauma, or in the treatment of neurodegenerative diseases, such as Alzheimer’s disease, Parkinson’s disease and HIV dementia. Nonpsychoactive cannabinoids, such as cannabidiol, are particularly advantageous to use because they avoid toxicity that is encountered with psychoactive cannabinoids at high doses useful in the method of the present invention. A particular disclosed class of cananbinoids useful as neuroprotective antioxidants is formula (1) wherein the R group is independently selected from the group consisting of H, CH3 and COCH3.
Hi Bargiepat
Sorry to be slow answering.
That looks like a good spray!
So if it's doing OK for you try two doses a day?
If after 10 days you find that of benefit, and no unpleasant side effects, try going to three times a day.
From looking at the regimen for prescribed Canabinol a very high dose would be about 10 of those doses a day So you should be well within a safe zone at three doses/day.
Remember that too much leads to reduced effectiveness. So if three doses / day seems less effective, drop back to two again.
I do hope this helps you a little Bargie.
Best to you as always.
Cheers
Kevin
Thanks Kevin...........
Bargie can you let us know if it works?
I asked my Mum's specialist nurse last week about it and all she could say was that she kept on being asked about it and needed to look into it!
Happy spraying
Well today I took 2 sprays........ about 15 mins. apart.
About 20 mins later I was sitting down watching the TV and certainly I felt the effect. My head felt thick and fuzzy....... I would imagine that would be a good feeling if I was agitated or anctious ( I don't suffer from either of those )
When I got out of my chair and went to my kitchen to make supper my balance was very much worse and still is.
I am going to stop using the spray for now but will try it again further down the road, when I am no longer walking.
On a brighter note..... this morning I booked a week's holiday in a beach side hotel in Lanzarote. 29th April - 6th May.
Cheers,
Patrick.
Ps.
Yesterday I only did 1 spray .
Hi Bargiepat
Thanks again for coming back to report.
I'm not surprised you were thick and dizzy. It was meant to be one spray in the morning and another shot say eight hours later. I am so sorry I didn't say that clearly.
Great re. Lanzerotte - I am for ever taking my hat off to you for your adventures.
Can we have a couple of photos when you get back?
Cheers
Kevin
Ok......... may try again tomorrow.
Great idea to book a holiday Patrick! Yes maybe go a bit easier on it tomorrow and see if any better?
Mx
The summer in the UK seemed a long way off.........
Update.
I am not going to use it again at the moment because I am currently able to drive safely, I believe driving is not recommended whilst using CBD oil.
I do however think it has a place in the treatment of cbd/psa but not for me at the moment.
Cheers,
Patrick.
OK that sounds very sensible Patrick! I think you have been a star to try it and give us feedback. Thank you
Mx
Hi Bargie P
You'll know what's best for you.
thanks for coming back and telling us all.
One question... Did it increase your appetite at all?
That's what I am looking for with Liz.
Thanks
Best
Kevin
Hi Kevin,
I think that it needed a longer time to build up any effects that may increase the appetite so I cannot say that it did.
I think it would be a case of 'suck it and see'........
I would say that the oil I tried had a reasonable taste, some others I have heard about don't taste so good.
All best wishes for a result,
Patrick.
What brand are you going to use if you do try it?
Hi Spiralsparkle
I think BargieP used this one
essentialcannabinoids.co.uk...
Based on my reading:
The 'daily' one on the left which gives the a suitable dose with each spray. The one next to it SOS 1000mg gives too heavy a dose per squirt to start with.
This one also ticks all of the boxes for being the full spectrum of CBD oils and of not being mixed with other things. However it is more pricey than some others.
Hoping this is helpful
Kevin
Thanks , my brain isn't thinking clearly at all today. Will take a look
cannabis does it help PSP I'm new here
Coconut oil, pricey!!
CBD oil
Coconut oil
