PSP Association
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CBD oil - Our experience

Hi folks

I just thought I would share our experience of CBD oil.

Liz was more able to talk today. (This varies and the CBD oil has not helped this.)

She said with CBD oil she:

Had less pain lifting her head and in her shoulders.

Had less stiffness and rigidity.

Was able to lift her head and use her arms more.

Was more able to use her legs and weight bare with assistance.

Felt generally better and more physically comfortable.

This would certainly fit in with the changes I have seen.

I have observed that she is in a better space emotionally as well. Less grumpy and more prone to humour and smiles.

A caution: There is a lot lot duff oil out there. Low cannabinol levels and a lot of marketing hype. We are using Provacan. There will be other good ones out there, of course.

Best to you all

Kevin

Edit:

These people are selling Provacan £12.00 cheaper a bottle than the Provacan site

althealth.co.uk/products/ma...

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That is fantastic news indeed.

How wonderful that she feels benefit and you can see it also and it is not pumping her full of more pharmaceuticals.

I really want to try Mum on it but I keep getting I wouldn't due to the epilepsy. Neurologist isn't keen at all, nor is epilepsy nurse but we see him for the first time in person in a couple of weeks so I will quiz him more face to face than over the phone.

Really hope the benefits continue for Liz and it makes everything more comfortable for her.

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Hi SpSparkle

The problem is that there is still dearth of research with regard to CBD oil.

I expect because of it's associations with Cannabis it was a total 'not happening' for research funding. Also a pretty good career destroyer to go into that area in the past.

Things seem to be changing.

I will bet £10.00 your epilepsy nurse knows nothing of it... The thing is that, necessarily so, the health professions have to work from accepted clinical practice. This is good because they keep us safe with known good clinical intervention.

Certainly Cannabis with THC, and its effects of neural stimulation, would not be a good idea with epilepsy. I imagine that would be petrol on the fire!

So it is my neurologist could not approve it, but talking to the ceiling mused that he might be tempted to try it in our situation.

Look - I don't know.

Please google.

Her are a couple of links to start you off.

edition.cnn.com/2017/05/24/...

epilepsy.org.uk/news/news/s...

We were discouraged and blocked every way we turned - because it was not approved clinical practice - The clinicians were trying to keep us on the safe straight and narrow. Which is good too.

We cautiously took the risk with a trial dose and went on from there.

But, I really don't know whether this is a good way for you to go.

One thing is sure - It is unlikely that a clinician will approve this and put their career on the line when they are no backed by approved clinical procedure for it.

Good luck

warmly

Kevin

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Yeah it is a hard one. If she ended up have a bad seizure I'd never forgive myself but at the same time want to try to make everything more bearable for her. Will ponder and read some more. Thanks for links.

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It s a hard one...

Best to you both.

Good luck

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When Mum first started using CBD oil I explained the effects to all the people involved, PT OT Drs nurses and they all surprised me with their interest and said if it helps then it’s our choice. The only person that wasn’t impressed was the consultant.

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What did the consultant say to you?

How has it helped your Mum, if you don't mind saying?

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I can’t remember but he was definitely against it however he certainly was not willing to believe the effects it had for Mum. He was almost intimidated. I asked if he would refer Mum to Dr Notcutts (a consultant who studied the effects of cannabis and very pro) he eventually agreed to refer. Sadly I received quite an angry letter from Dr William Nottcuts saying how sorry he was but was unable help even though he believed she should be helped. Will try find the letter. Helped Mum with her speach in the early days where she was able to speak and think much quicker. Helped with her balance and was able to walk again unaided. The effects lasted around 6 months.

I have just ordered the one Kevin spoke about but they have none in stock but will send me a similar one the difference being it’s 6% not 5 % Will let you know how she gets on xx

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That's fantastic benefits. So pleased for her.

Hope this other one also reaps some benefits.

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There comes a point when things are so bad you kind of think: "What is there to lose?" Its a fundamental research ethic to "balance the harms and the benefits" in conducting the research. Where a professional must be conservative and rule-bound, you may have more leeway in considering the balance....But still a big decision.

Good point Kevin made though: Is the neurologist assuming CBD Oil contains THC? (the neuro stimulant??).....

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Hi

No, ours was aware of it, but couldn't recommend it or even comment because of the lack of formal research. Which is fair enough. The matron in the home listened and then went and read up on it. Some tome later she made quite positive comments about it and said one of the staff had started using it for some other complaint. However the home needed the GP to state that it was safe and would not interfere with other medication and he can't do that because there is insufficient research and it is not approved for that in UK treatment practice. Its a little bit of a paradox!

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Yes exactly what was said to me. No one can say whether safe or not and no scientific clinical evidence to say it is worth trying. Neurologist said can't comment but I'm concerned re effect on Epilepsy. Epilepsy nurse said he would or could not advocate it's use in Mum's conditions. This was over the phone though so I am going to ask him face to face to see what his body language is also saying.

Kevin - so the home won't administer the oil, you have to?

Our GPs also won't ok safety either but they can't anyway as not regulated . Like you say a paradox

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In the US, there is a strain of CBD called Charlotte's Web that is designed specifically for seizures and they have had great success treating children who were suffering terribly. I think other strains are also effective (like what Kevin is using) but this one is the most publized. I am not an expert but interesting we use it for seizures now (and it has been controversial with some parents originally being arrested)

marijuanabreak.com/charlott...

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Thanks for the link.

It seems there is alot being done research wise for epilepsy in children and cannaboids. That is what I seem to come up when I do internet searches on CBd oil and Epilepsy

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Hi Falcon - that does look like a very good product indeed.

If I may - I'm not sure it is specifically for seizures, though that was the start of it. It looks like a good quality CBD oil and it should cover all of the bases.

The only caution I would give is their recommended dosage is very high for our purposes. 2-3 drops will yield approx 6mg dose which is more near the norm for treating Parkinson's tremors and stiff muscles.

It's a bit on the pricey side too.

This helps with dosage. However I got my 6mg from the NHS recommended prescription rate.

cbdoilusers.com/cbd-microdo...

Thanks for sharing this. It all helps.

Best to you

Kevin

:)

P.S. Here are some reviews of some of the brands in the US.

cbdoilusers.com/cbd-oil-rev...

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Thanks again Kevin for all the information. I was hoping someone with more knowledge/research would add to this. :) I did not mean to intend what these kids take is what we should (hopefully no confusion there,) but simply wanted to make sure no one specifically shied away from potential benefits if they or loved one had siezures without understanding how others use CBD. Maybe at least worth looking into. Thanks

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Spiralsparkle. I'mnot sure why they are against it. It is proven to help with seizures as well as muscle stiffness and focus and speech. I only get mom from a licensed dispensary. It only has help seeds solidified and olive oil in it. Mom had nothing to lose and she wanted to try it. Alot of Drs are still brainwashed about the oil. What I give her has no thx in it at all. And really has been a god send. Good luck and please only buy it from licensed dispensary.

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Wish I had tried CBD oil on my son.....that I had been aware of it. I knew of Marijuana (Pot) but not of the oil.

I'm glad that Liz is being helped by it.

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Thanks, but this is 'breaking news' You would not of known about it back then.

As always I am mindful of your great loss. :(

Please accept a virtual hug.

Warmly

Kevin

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Thank you, Kevin, for reminding me that it was not so readily available when I needed it for my son.

In this country (USA) politics reared its head. Like guns, pot was not allowed (against the law) to have any research done. The little "Pot" used for research had to come from a particular govt owned farm in some state in the south.

I have no documentation I can site, but I believe that it was the alcohol lobby that influenced the laws for NO research on Marijuana (pot).

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That's great Kevin. Good Liz is showing improvement from CBD.

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Hi Kevin

Certainly sounds like your stuff is better than the HEMPURA as Colin has not owned up to feeling as much better as Liz. He just says h it help to relax him but I haven’t noticed any other changes.

Think I will definitely send for the one you have, even if it does not make as much difference to him, it is a better way of dispensing it, more accurate than trying to get a drop under his tongue.

Thank your for the feed back very useful

Love and hugs

Helen xxx

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Well I don't know - Liz is responding to this... But from my initial reading it's a variable thing.

Do come back with your experience.

BTW - Its great for carer stress too ;)

I feel brighter and less stressed and tired than I have for a long time. However I still feel it all, the loss and the struggle. So it is not like being sedated.

Warmly

Kevin

xxx

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So pleased that Liz has had a positive response. Anything that can relax the physical tension and lift the mood is fab. I guess Neurologists are nervous about advocating anything that is not backed by mass research. I know you have done your homework and I really hope this positive response continues for you both . Well done

Love Tippy

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Thanks :)

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I think it worked for me when I briefly tried it but I stopped because I still drive and I think possibly it is not good to use it if you drive.

I am so pleased Liz is enjoying it.

Patrick.

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Well Pat, that will at least be ONE good thing to look forward to if/when you get to the point you can't drive! ;-)

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Thanks Patrick. :)

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It's great to hear of some relief Liz is getting!

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Can you post the website where you get it please x

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Hi Sarah

ciitech.shop/collections/pr...

One 'squirt' is 6mg which is a dose and it should be used twice per day - 12 hours apart.

xx

PS These people are selling the same thing £10.00 cheaper!

althealth.co.uk/products/ma...

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Thank you, have ordered so will let you know how Mum gets on 😁

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Please do

Good luck :)

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I can never resist a bargain!

Spoken with Mum again this morning about it and wanted to make sure she understands that Drs can't say if ok or not but is she wanting to try and she is.

Ordered and look forward to receiving it and us both having a benefit of less stress cortisol running the show all the time.

Thanks Kevin x

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No worries - Good luck :)

I tried it on myself first - Just to be sure - ;)

xx

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I probably will do that too!

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Mum has always been more complementary approach to health anyway and hates having to take drugs so I had a good inkling she would want to try it.

She saw a homeopathic therapist for years when Drs couldn't help her decades ago with health issues.

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We have tried a lot of different things. This is the only thing other than exercise, massage and Physio which has helped - outside of the usual meds. like bladder control.

I do hope it helps her and do come back and tell us all please.

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Yes I will do.

I will only start her on once a day to see what happens first.

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Got yesterday Kevin will start it on Monday xxxxx

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Good luck - do come back and let us all know how it goes.

xx

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Kevin ours is drops not a spray? X

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Hi

Provocan is a spray. The one I found for KL in the States is delivered using drops.

xx

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Ours is called poovacan daily aCBD oil 500mg It’s say one spray but it not a spray, will give george maybe 5-6 drops? What do you think. Yvonne xxx

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Does it look like this?

ciitech.shop/collections/pr...

and what does it say on the label in terms of:

How many ml is the bottle

And how many mg of CBD oil?

I should be able to help from there.

Did you buy it from Provocan or here?

cbd-hemp-oil.uk/product-tag...

Thanks

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Kevin 500mg CBD it’s say daily cbd oil. It does say 1-2 sprays undertone tongue. 1 spray = 6mg CBD xxxx maybe i ordered the wrong one xxxx

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No you have the right one :)

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Thank you Kevin xxxxx

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Hi

I've had a chat with the Provacan people and they said that they are temporally going over to droppers because they have made their product even more wide spectrum and it is too thick for the spray nozzle.

They will be returning to spray nozzles when they sort the problem out.

Meanwhile they say that about three drops will give the desired 6mg dose.

Kevin

xxx

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Thank you Kevin you are amazing xxxx

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That is really interesting to know.

Gails Consultant was all for it having done some research on it in the Channel Islands, however it is not licenced for use in Hampshire.

I was able to source some good quality Pot, but Gail wanted to try another medical approach first.

Sadly pneumonia got in first so she didn’t get to try either.

I am still very interested in the medicinal benefits and hope the government will expand trials. It’s got to be better than trying stuff on the street.

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Hi Gadgetgeek

I hope things are 'as best as can be' since Gail's passing.

Just for info. CBD oil can be sold and used legally in the UK.

The full Cannabis is another story. Certainly in America there is more research being undertaken, but with PSP being a rare disease we are probably at the end of the queue.

Wishing you the best. Its good to see you here again.

Kevin

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Great news . Anything to brighten the day.☀️ What a lovely way to begin a new season.

I would really like Dan to try it. I am having a hard time researching a good product in the US. Can you tell me what to look for. The brand you are using does not appear to be available here. Any suggestions are appreciated.

Karyn

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Kevin, I tried again and was able to place an order and use a US mailing address. Thanks again.

How often do you give it to Liz?

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Hi

Liz get's one 6mg dose a day. Twice a day would be better.

I've found this in the U.S. very similar but not a spray. It looks like a good product

Broad Spectrum

CO2 extraction and fully tested which enables proper dosage.

nuleafnaturals.com/shop/

I don't know how their dosing works, but, from reading you should be looking at 6mg twice a day.

So their 240mg / .17 fl oz bottle should give 40 doses.

This might be a cheaper way to go.

Good luck

:)

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Thanks, I will try that one. The Provocan web site seemed a little easier. I thought that Hemp oil was a little different. I found a large producer in the US of several different types and strength of CBD oil that they market as Hemp.

Thanks. This has been confusing to me and I want to do my best to purchase a quality product. Thank you for all of your research and help.

Karyn

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It is confusing because the marketing folk got involved.

Cannabis is a member of the Hemp family.

In some countries where CBD oil is not legal people often market hemp oil. It comes from the Cannabis Sativa plant. However they use those parts of the plant which are low in Cannabinol and market it as Hemp Oil. There are some health claims for it or something.

Then a company like Nuleaf comes along and refers to their product as Hemp oil even though they have selected the parts of the plant with cannabinol.

The bottom line is to look for a decent percentage of hemp oil. So Nuleaf has the same percentage as Provocan at about the same price per amount of Cannabinol.

Other considerations are to get "full spectrum" cannabinol where a wider spread of the different Cannabinol types are included and not just the dominant one.

I do like the spray part of Provacan though.

Good luck

Kevin

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Thank you AGAIN. I want to be sure I give it the best shot. Dan’s condition seems to be different each day, yet basically progressing. I would love to bring him even the slightest amount of comfort and happiness . (I could use a little peace of mind too)

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Stop Press

These people are selling Provacan £12.00 cheaper a bottle than the Provacan site

althealth.co.uk/products/ma...

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I`ve ordered some right now. Thank you.

xx

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Hi Kevin,

Is this oil only for CBD? Any known efficacy on PSP?

Just wondering?

M

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Hi M

Well, my wife has PSP... so my notes above are a start.

The confusion lies in Cortocobasal Disease (CBD) and Cannabinol oil also called CBD. There seems to be a move to calling the illness CBS Corticobasal Syndrome.

There are lots of reason why it might help with PSP as dopamine issues miht be involved consequent to the brain degeneration and Cannabinol seems to improve the dopamine levels.

So it really is a try it cautiously and see if it helps.

PSP under the new diagnostic criteria has become a cluster of differentiated PSP illnesses. So it is not easy to look things up as one might have done in blissful ignorance as in the past.

There is a member on this forum who has done an enormous amount of work laying out the different types and how they might present. I am hoping they will post it for us all here.

Hinting loudly ;)

Sorry not to be more definite.

Best to you

Kevin

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Hmmmn may just look into this miracle oil!

Thanks💕

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Good luck

:)

xx

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Absolutely wonderful for Liz, I found Magnesium oil helped Leon with his wrist pain, and gout.

Thanks for sharing

Cheers Marg H

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Hi Kevin, very interested to hear of the favourable results experienced by Liz when taking Provacan. I would like to try it on my husband who has Parkinsonism - possibly progressing to PSP we are not sure. His is bedbound and has many of the symptoms that your wife has. Can you tell me - do you use this Oil along with all the existing medication prescribed for your wife, and did you ask your Neurologist if it was a safe to use this with all the other drugs. Lastly, did it seem to work straight away or was there a waiting period? I am very interested in hearing your comments.

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Hi Ependorph

I is often used by people with Parkinson's for tremors and muscle bunching.

Best advice is to check with your neurologist if any medications being taken affect the Central Nervous system. This would include medications like Levadopa and Sinemet.

Having said that online reading says that L Dopa and CBD use two completely seperate metabolic pathways and so are safe t use together.

hellomd.com/answers/5ac6656...

My wife is not an any Central Nervous mediation other than a benzodiazepine and it does not interfere with that. Again a wholly different metabolic pathway.

We did ask our Neurologist and he was very clear that he could not approve anything which was not backed up by clinical testing and then approved for clinical use, but he very specifically did not tell us not to use it when we said we would give it a try. This is the clinical paradox. No Dr in the UK can approve it for use with PSP because no research has been done specifically on PSP.

If you google Parkinson's and CBD oil, or Parkinson's and Cannabinol (same thing) you will find many subjective reports along with some clinical descriptions.

You might want to get some and try it on yourself. That is what I did at first.

I hope this helps a little.

Best to you both

Kevin

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It's great to hear that she's experienced such an improvement. When I first started using CBD oil, my main goal was to get an anxiety relief, but it helped for so much more than that. I've been getting it from hemp2wellness.co.uk/ so that's the only one I can really recommend. Also, I'd advise to start with 5% CBD oil and slowly move to 10%, 15%, etc.

How long has she been taking it? I hope you continue to see improvements.

Best of luck!

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Forgive me, but your post looks like one from someone marketing the product.

Though it is good to have the heads up on a 'new to me' company.

No matter, the product does seem, at first to tick the boxes on cold CO2 extraction etc.

However it is exceptionally expensive unless one buys the 1,500 mg bottle (compared to Love CBD for example.)

Also starting with the very expensive (X3 the price of some the best quality competitors) 5% tincture with 2 drops at about 5mg in total one might as well start with the more competitive (price wise) 1500 mg with one drop at 7.5mg. Thought that price can still be beaten by some top quality products.

Drops are not as easy to administer as the spray dosage systems. Especially for folk here where there are mouth opening issues.

I can't find what carrier they are using to dilute the CBD. That would be important to me too.

The website really goes to town confusing hemp oil and CBD oil. The company seems not to understand that most other companies quite carefully separate the two terms with Hemp oil meaning oil from seeds and stalks which have virtually no CBD content and the oil from the leaves and flowers which are high in CBD and THC The THC is not extracted at the same time so the oil we buy, as CBD oil only has the CBD oil. They say, "Hemp oil refers to the oil extracted from the whole hemp plant – i.e. from the flowers, leaves and stalks. It contains all the wonderful active ingredients in the hemp plant such as cannabinoids like CBD, CBDA." So their hemp oil is very atypical of the market and folk buying it to use in countries where CBD is illegal risk being arrested... If this statement is correct and I doubt it is.

The company go on to state, " CBD oil contains CBD, and because it has been heated, there is no CBDA." So much for the advantages of the cold extraction CO2!

They do state that a lab report is available on request. I would want to see a few of them for different batches and I would want them to be independent as well. Which is industry best practice.

All in all reading the website I had a heart a heart sinking feeling about this company.

I can think of at least three other companies selling in the UK where the prices are better and the companies have an established reputation as well as their products meeting high standards with better oil delivery systems.

They would not be my first choice.

I have bookmarked it and will watch for developments.

Thanks

Be well

Kevin

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wow ....serious research Kevin..! Great contribution to our site. XX

Anne G.

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