CBD and THC : I still use CBD and THC... - Restless Legs Syn...

Restless Legs Syndrome

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CBD and THC

Shumbah profile image
18 Replies

I still use CBD and THC for pain it works really well HOWEVER the prescribing doctors don’t realise we need very specific plants or it can make it worse.

I have been on Nanibis it works well for pain the doctor changed it to a brand called spectrum from Canada and it overrode my buprenorphine. I thought oh know it stopped working. I was tortured for nights well 2 weeks at least. The dose was also triple the THC I had been on.

My 23 year old son worked it out and he said Mum you are going to be really crook for 2 weeks. Coming off that high dose and he was right. As the days went in my buprenorphine/Subutex worked again thank god !

DR Sarah Benjamin from the John Hopkins institute told me whilst I was there that we must have the right variety of marijuana plant and in edible form to stop the movement in needs to go via the liver to give us longevity to get through the night. If you spoke the correct plant expect to get up during the night once for a puff.

It is easy to google the varieties as they are also used for MS ,Spasticity , Dystonia, PLMD and RLS.

Most THC products have CBD added mine is a 8.33 THC 8.33 CBD

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Shumbah profile image
Shumbah
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18 Replies
Sampsie profile image
Sampsie

Hi Shumbah, I'm glad you got to the bottom of it! And things are working again.

The trouble is, I don't think most cannabis doctors know which ones work. I've tried two prescriptions, neither have been successful. One pure CDB, another 30% THC. The latter increases the side effects of the Oxycodone and causes RLS for about 30 minutes before taking effect.

In the UK, they can't say they are prescribing cannabis primarily for RLS (not according to my clinic anyway), as it's not on the criteria to qualify having it. So those prescribing are doing so for pain management, and sleep to a degree, but my clinic certainly doesn't have experience in using it for RLS. I've given up with it. It's too expensive to pay £150 for a bottle of something when it turns out to be unhelpful. The THC was £200 which is fine if it works as it would last four months, but not when it doesn't.

I'm coming off the Oxy - it's ruined me the past three or four months. I forget as my memory is so bad from not sleeping on it. I can't even remember what the consultant said he was swapping me to and I only spoke to him this morning. I think it may be a sleeping pill which will come with a whole other batch of problems like addiction. First step is to get off this though. Although I do remember him mentioning cognitive dysfunction. And without a clear head I can't advise him what I want to take. I did mention buprenorphine but he didn't seem keen and suggested a DA!

LotteM profile image
LotteM in reply to Sampsie

Sampsie, you don't sound good. I can relate, as the Oxycontin also messed with my brain, mood and functioning. Please do write down everything you need to say to your doc, and everything he/she says - or aak for a written summary. Your doc doesn't sound too knowledgeable about RLS. If you want to ask for buprenorphine again, ask for Temgesic. It is a brand name, but that name is much wider k own than the substance name (bup). I hope you will get better soon.

Sampsie profile image
Sampsie in reply to LotteM

Thanks Lotte. I didn't know he was calling or I would have tried to prepare. I'd emailed a second time asking for help, the last mail was over two months ago and was ignored. So I wasn't expecting a call.

He doesn't seem to know much really. He wasn't aware that people can become wired on opiates, or that they can affect your bladder, and he thought augmentation on DAs was rare. I need to contact DrB for a suggestion and then suggest that to my consultant. The trouble is waiting months once I start a drug before being able to speak to him to say it doesn't work.

I'm just really tired with it all. I hope I'll feel better once I am off it. He said I should start to come off it tonight, until I pointed out it will take weeks before I have a prescription to replace it with. He assumed I could cope with no meds during that time. Shows how little he really gets it, sadly.

Are you taking Temgesic now? Sorry, I can't remember. Thanks.

Restlessnomad profile image
Restlessnomad in reply to Sampsie

I've tried LOTS of meds for my RLS without success. Either didn't work or made me feel worse. For the last year, I have been taking Zolpidem for sleep and can function so much better now that I get 6 hours sleep. I still have pain dailly and am waiting for the next miracle med. Kim.

Sampsie profile image
Sampsie in reply to Restlessnomad

Me too! Glad you're getting 6 hours👍

Shumbah profile image
Shumbah in reply to Restlessnomad

I had horrific pain I am suspicuous it was from Metfromin I was taking for weightlossNannabis which is a form of THC workes for me.

I am working with a second generation healer she is working on things for us peeps to try and she will keep tweeking upon our feed back. That is why Iam so quite lately busy as !

will let you know when available to buy and try

Shumbah profile image
Shumbah in reply to Sampsie

Sampsie send me you email address to kester@aghequip.com.au and I will send you my doctors letters

I had Alzheimers from Oxycodone I could no longer hold a conversation even with my family as i could not remember what people had said.

You appear to be in the UK you should be able to get Temgesic which is a microdose version of buprenorphine starts at 0.2 mcg

If they would give you buprenorphine 2mg you may need to break in half .

with Buprenorphine in this format there is no need to wean I did a straight switch from

NOW THIS INFURIATES ME !!!

20 mg Oxycodone slow release

5 mg endone TWICE DAILY

10 MG Stillnox

And Nanabis marijuana spray 8.33 THC

Straight switch NO WEANING

2mg Buprenorphine

Come on doctors look at all those addictive drugs and the DA are more addictive and can take years to wean off ,which means years of torture for us.

Please Doctors you are in a postition to make a difference to Hundreds of thousands of lives.

Instead I am here doing a job for free trying to make a difference.

The only people I have found who have had problems with Buprenorphine are usually because they are augmenting and weaning off DA and a few of you I have helped you have stuck with it and are now the winners.

Also I cannot take Temgesic night after night it gives me nausea and I know some other people who have had the same experience.

Not sure why perhaps it is the volume or allergy to one of the fillers.

Buprenorphine must be singular with nothing else added.

The longer I am on Buprenorphine the sharper my memory is I feel as sharp as i did in my twenties.

With my whole heart I just wish Doctors would give people a chance to stop the cocktail of horrid drugs they are on with horrific side effects to.

JUST ONE DRUG BUPRENORPHINE

I pray for this every single night that doctors will study and learn that buprenorphine is totally different from other opioids and should be reclassified !

Amrob profile image
Amrob in reply to Shumbah

Hi Shumbah, when you say you can't take Temgesic night after night, do you mean that the longer you take it the more nauseous you get?Can you take it say at least one night without feeling nauseous?

I got such terrible nausea once with Temgesic that I'm not game to try it again.

Also, have you found anywhere in Australia to get straight buprenorphine?

Shumbah profile image
Shumbah in reply to Amrob

Hi Amrob,It is not uncommon for nausea on new medications.

However when I started Buprenorphine/Subtex [Australian brand]

I broke it down into about 8/10 tiny crumbs and I started with 1 tiny little crumb I slept like a dead body I did not move all night NO OTHER DRUGS.

I built that up over days I let my legs dictate the crumbs I took.

Eventually settles at about .8 to 1 gm which is half the dose available, once I was well enough to exercise I need 2mg Which is one tablet.

So from being in the US on Buprenorphine then coming back to Australia and going onto 5 temgesic at night no way that is to much subkiqual.

What I would do is I would break the Temgesic into the tiniest of crumbs with a pill cutterthink grains of sand size and build up slowly.

I was fortunate to bring back enough from the US that I had enough to go in for the big fight.

I am the only person I now of in Australia on Subutex /Bup.

I am working very hard to get access for others in Australia hopefully by march April this year will be availabe via a doctor who i setting up a retreat in Byron Bay with his own pharamacy and will private script for refractory RLS sufferers and make the subutex wafers onsite.

He has bothered to learn about this because of me and is jumping through massive hoops.

Amrob profile image
Amrob in reply to Shumbah

Hi Shumbah, thanks for your reply. I'm not sure i quite followed your description of dosing however.

What dose of buprenorphine did you start off on?

The Temgesic tablets that i have are 200 micrograms of buprenorphine.

I tried a half dose of this i.e. 100 micrograms and still felt incredibly nauseous the entire night.

I have had mild nausea starting new medications previously however this was next level.

Shumbah profile image
Shumbah in reply to Amrob

Where r u located ?

Amrob profile image
Amrob in reply to Shumbah

WA

Shumbah profile image
Shumbah in reply to Amrob

I was asked this last night by a lady who a was I going to speak today. am I a He or she ?My name is confusing I am a female and Iive in Brisbane Australia.

If we can connect on the phone I can make this really simple for you.

I do this a lot here in australia and even I have spoken to people from this site on the otherside of the world at all hours of our night phone via messanger facetime etc.

Iam available now for about 20 minutes then after midday tomorrow qld time

kester@aghequip.com.au s if you would like send me your number on email

Amrob profile image
Amrob in reply to Shumbah

Thanks very much for your phone call Shumbah. You really are a champion!! I'll keep you posted as to how I go.

Madlegs1 profile image
Madlegs1

Shumbah-- you are a trail blazer!Fantastic job.

Thanks so much for all your research.

You are moving RLS treatment forward all the time.

May your legs be peaceful ever more. ( An ancient Sumerian blessing) 👍🤠😜

Shumbah profile image
Shumbah in reply to Madlegs1

Thank you my lovely , my first passion is people.

Lysonic profile image
Lysonic

I’ve had severe RLS for 30 years and tried everything. Nothing worked. Acupuncture, chiropractic, naturopathy and more. Thankfully the side effects from Ropinerole etc were so bad I couldn’t take them.

When medical use of cannabis was legalized in Canada (it has since been fully legalized) I found a recognized specialist and got a prescription for 100% CBD. I put 10 drops under my tongue every night but it did nothing. I increased the dose to 15 and then 20 drops but, again, it did nothing. When I went back to the doctor he said to try a 50/50 mix of CBD and THC. It worked. Not every single night, but most nights. The worst side effect was that I would feel a little cotton headed for a while in the mornings. (Btw, I never, ever felt “high”).

Unfortunately, I moved from Canada and the rest of the world is pretty much still in the dark ages when it comes to understanding that drugs are a medical issue rather than criminal.

My point is that any oil from a licensed, regulated supplier will be the same, you just have to play with the percentage of THC to see if it works for you. When I was taking it I was not on any other drug, just minerals and vitamins, so combining it with other drugs like ropinerole, OxyContin etc would certainly distort the results in some way, perhaps good, perhaps bad. Good luck!

GuillaumeL profile image
GuillaumeL

Just sharing my experience with THC/CBD oil. I use indica oil with a balance of THC/CBD in combination with 300 mg pregabalin. It works wonders for pain and spasm relief and for allowing me to sleep and all that despite suffering from pramipexol (DA) withdrawal at the moment. That being said, I live in Québec, Canada and weed is legal and weed shops are state owned. So it's easy to know exactly what you're buying (sativa / indica, THC/CBD content and so on). However accessibility doesn't mean affordability. My doctor told me she couldn't prescribe it herself and that I'd need to get evaluated by a pain specialist (on top of my consultations with neurologists and sleep specialists...) to get an official prescription and partial refund from insurances. So it's costy, but totally worth it to be able to sleep despite the very thick wool head in the morning.

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