Just started Medical Cannabis for RLS... - Restless Legs Syn...

Restless Legs Syndrome

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Just started Medical Cannabis for RLS and Sleep

Goldy700 profile image
31 Replies

I have been prescribed medical cannabis for my RLS - I live in NSW Australia. It is the best thing I have ever had to help. This is a 2 part CBD 1 part THC mix. I only take 1/2 ml or 1/10th of a teaspoon per night but it gives me the best sleep ever - from waking up 3 - 4 times a night with full on RLS to once per night with mild RLS easy to manage with a hot bath.. The full dose is 1 ml but I don't think I need it. I think if I took the full dose it would not be a bother me at all. I wake up feeling very refreshed and have had no side effects. For those trying to get off augmentation if you live in a country where medical cannabis is legal - I highly recommend you try medical cannabis - it is wonderful. It is however totally different from just taking CBD oil. The therapeutic medical cannabis is much stronger and the THC very good for pain and sleep conditions.

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Goldy700 profile image
Goldy700
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31 Replies

Thats wonderful to hear. And its been mixed so you get the best out of it for working and you know what you are getting being prescribed.

martino profile image
martino

Good for you! I have been so tempted to get cannabis but the sourcing of it has been a problem. If I could get it from a user I may be more comfortable but it was usually friends of friends. I do hope we progress in the UK to the point that those in need can at least have the option of using something which may help with both sleep and pain

Highlighters profile image
Highlighters in reply to martino

I have suffered from rls all my life, used cannabis between 25 to 47 years of age, grew just enough for personal use as couldn't afford to buy it,was completely free from rls in that time.

Then we had our first child data late stage so not wanting to ring our boy up around cannabis gave it up, the rls and agitation of it immediately returned, now at the age of 60 am on Ropinirol with verging success, am having to increase dose to much also am only sleeping for about the first 3 hours nd that's about it for the rest of the night. We don't have medical cannabis in NZ but would love to go back on it but fear a conviction

involuntarydancer profile image
involuntarydancer in reply to Highlighters

Highlighters, do be cautious about increasing ropinerole. At higher doses it leads to more problems than it solves. When it stops being effective, it is almost better to decrease it and try adding in a different med such as gabapentin/pregabalin or a low dose opioid. Many doctors are unaware of the issues with dopamine agonists such as ropinerole and give advice that inadvertently leads to much suffering (not for them - for their patients). It is often necessary with rls to educate yourself before taking the advice of a doctor.

In case you are not aware, it is very important to ensure that your iron is high. Get it tested and if serum ferritin is below 100 start a supplement even if they tell you your levels are ‘normal’.

Highlighters profile image
Highlighters in reply to involuntarydancer

Thanks, let me know how the cannabis goes

Jumpey profile image
Jumpey

Glad for you.Long may it continue.x

maranatha777 profile image
maranatha777

Hi Goldy. Sounds great. I was told it was not available in Australia, but maybe the doctor meant Victoria. Obviously it is available in NSW. I will make some enquiries about it because I want to get off drugs. The CBD Essential oil doesn't help the RLS. Thanks for writing as it gives me hope for future relief if this drug augments again. All the best.

Goldy700 profile image
Goldy700 in reply to maranatha777

Hi Maranatha 777 - cannabis is legal in Victoria and all states as far as I can tell by this information:

canstar.com.au/health-insur...

My doctor is a medical cannabis expert and she is able to prescribe it for a large range of conditions - including RLS. Her criteria is pain and I was able to convince her that RLS is a form of torture and pain. Also it caused lack of sleep and she agreed that my condition warranted its use. It is purely up to her whether I am approved not any government body and it was approved within 4 days and I had my script within the week. You need to go to your doctor and insist that you get a script. Tell your doctor to Google Teresa Towpic - she is an educator on medical cannabis and can instruct your doctor on its prescription. We need to start being more vocal about our needs and not put up with being shunted into taking harmful drugs such as Pramipoxole and opiates. The cannabis is far superior in my view.

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Goldy700 profile image
Goldy700 in reply to maranatha777

Further to my last email - the cannabis I have been prescribed is from Althea and it is an excellent product. I find 0.5ml is enough to get me to sleep and reduce RLS. It has an App which can be used by patients and doctors in Australia. Thought this might help those who feel a bit lost finding someone to help them access medical cannabis.

"Althea Concierge is an increasingly integral tool for medical practitioners, providing assistance with the registration processes, scheduling consultations, administering prescriptions and maintaining patient treatment plans. To further support patient access, Althea Concierge also contains a directory of registered medical practitioners and pharmacists with the relevant experience, licenses, and approvals, to prescribe and supply Althea’s medicinal cannabis products."

play.google.com/store/apps/...

Kerryt66 profile image
Kerryt66

How do you take the cannabis? Is it a tincture or a vape?

Goldy700 profile image
Goldy700 in reply to Kerryt66

It is oil - and you hold it under your tongue for a minute and then swallow. It is quite strong so a dose of 1/2 ml is quite enough for me and last night I slept well and did not get RLS at all. There is a huge difference between the medical grade full spectrum oil and many of the CBD oils out there.

CoMtWo profile image
CoMtWo

Which type THC (I assume something Indica like). And the proportions of THC to CBD? Finally, do you take as a tincture under the tongue? I've been vaping 2 puffs of an indica type of THC (50/50% mix with cbd oil) in a vap-ready cartridge (I live in a legal MJ state and have a med marijuana card as well). I don't like the idea of smoking, but haven't found a good effect from the CBD/THC mix I've tried (have taken tincture under the tongue). The timing of taking something orally, even a tincture is critical - and I've had problems with that, thus the vaping instead.

Goldy700 profile image
Goldy700 in reply to CoMtWo

I do not know the variety but presume it would be Indica as that is calming. It definitely makes me feel calm, relaxed and helps my sleep. The ratio is 2 part CBD 1 part THC. I take 0.5ml or 1/10th teaspoon at night holding under my tongue for a minute and then swallow. Seems to last quite a long time as even though I wake up during the night I go back to sleep.

Higgi73 profile image
Higgi73

So jealous

Hi Goldy, that is great news. I’m thrilled for you. From reading of people who have had success with cannabis for rls I would suggest you identify the strain that is working so well as there are hundreds and it seems that some work much better than others.

Oh, and if you do find the strain could you post it? None of the strains I have tried have made any impact on my legs. I’d really love to find one that worked.

Goldy700 profile image
Goldy700 in reply to involuntarydancer

It would undoubtedly be from the Indica strain as this is regarded as more relaxing. However the brand name of the oil I have been prescribed is Althea and it has Jasper on the bottle. It is 2 parts CBD and 1 part THC. If anyone wants to make enquiry it is info@althe.com.au. It works extremely well and I can highly recommend.

Izzybelle22 profile image
Izzybelle22

Hi Goldy700. I want to thank you for your post. The one sentence that caught my eye was that "medical cannabis is not the same as CBD oil." I have suffered for approx. 15+ years with RLS and have been on Requip (ropinirole) for the entire duration. About 4 years ago, give or take, augmentation set in so badly that I didn't know what to do so I have done nothing. I have increased my ropinirole but can barely stay in front of it. Two weeks ago, Dec. 26, 2018, my new endocrinologist recommended medical marijuana for my numerous physical pains due to a number of different issues, none of which was for my RLS and I agreed. To know that this could be the answer to my prayers and also help my RLS was music to my ears! Thank you so much for your input. And just as a side note, I get about 20 spam emails a day for CBD oil and didn't know until now that there is a difference. Looks as if there is light at the end of the tunnel. Thanks again!

mmb8083 profile image
mmb8083

Hello Goldy, what is the brand/type of cannabis you are taking. There seem to be so many to choose from.

jjyankee profile image
jjyankee

HA! I just wrote a post about this- I take the same thing- a 2:1 mix. It is the only thing that has ever worked for my RLS and now neuropathy as well. Several of my family members are also using the oil with great results for sleep, pain, and anxiety. It really is amazing stuff. And I agree- I started with a good CBD oil and got no results until I mixed it with THC- it's the combination of the two that becomes a powerhouse.

Margaretha777 profile image
Margaretha777

Dear Goldy700. Hi. I am from Victoria and I asked my doctor if he could get me the medical cannabis. He said no, only for two problems, Parkinsons and Fits (can't think of proper name). He said to give it for anything else was illegal. So how did you get it? And, is it still working? Love to know. I take Sifrol, but it augmented on my last year. I am back on it, but afraid it might augment again, there are little niggly symptoms of it.

esselte profile image
esselte

Hi Goldy - Thank you for posting your experience! I have recently been prescribed the Medical Marijuana you are taking for RLS. It is also Althea Jasper 5ml THC: 10ml CBD. I take it 1.5hr before bed and I get to sleep quickly and sleep thro the night. I've stopped all my RLS meds and don't get any bad side effects from the MM. Amazing to sleep well after so many years of broken sleep.

I got my script from the Cannvalate clinic - all done online. The nurse & doctor were easy to talk to and the whole process took about 2-3 weeks. They just needed copies of my disease(s) diagnosis. Also sent a referral from my GP. The cost was reasonable and I was able to claim most of the cost from my Health Fund.

Goldy700 profile image
Goldy700 in reply to esselte

Good to hear that Esselte - I find I need to take 1ml to really feel the effect. I started off 0.2,then 0.4. 0.8 but found 1ml the best for me. It is expensive but no bad effects at all.

hilbo profile image
hilbo in reply to esselte

Hi Esselte, which health fund are you with and do they actually cover the whole cost each month ($540) as i am also with cannvalate and they have prescribed Jasper for me too as i have grade 4 osteoarthritis in both elbows.. It is a tremendous help for pain and sleep.

esselte profile image
esselte

Hi Goldy700 - thanks for reply - my Doc suggested .5 ml to start and titrate up if necessary. Script was for 2x50ml bottles. Do you take am & pm & how long before bed? I have to get to sleep before 10.30pm otherwise my RLS & the electric shocks down my body & legs start! How long will your bottles last? Next Dr appt is in 3 months time.

Goldy700 profile image
Goldy700 in reply to esselte

Hi Esselte - I was given an offer of 3 bottles for $800. Normally it is $400 per bottle 50ml. It is expensive so I try not to take it all the time. Yes going to bed early seems to work best for me. I think it has something to do with extended time under artificial light and stimulation from computers, TV etc. Good to hear of your experience. How does the price compare with what you pay?

esselte profile image
esselte

Hi Goldy700 - My oils cost $540 for 2 x 50mls, + $25 for initial consult, $80 Dr consult. I was able to claim $500 on my health fund - will have to wait till next year for claim! I'm gradually titrating up on the oil (or is it a Tincture?) as waking up too early!

Cheehong profile image
Cheehong

Hello Goldy700 I also live in NSW Australia. May I ask how you could get the Medical Cannabis because I also would like to try it. How and where can I get prescriptions and how to purchase this thanks !

Goldy700 profile image
Goldy700 in reply to Cheehong

Hi Cheehong - Dr Theresa Towpic is able to prescribe medical cannabis and is a world expert. You can ring for an appointment 02-88200811 and the address is 482 Windsor Road, Baulkham Hills, NSW. Good luck with it all.

Goldy700 profile image
Goldy700 in reply to Cheehong

Hi Cheehong - WA is quite backward when it comes to medical cannabis I am afraid but there is a clinic you might like to check out. As far as brand - it isn't important, I have tried a few brands and they all work well. Your doctor should titrate the medicine gradually up until you get your desired results. Your cannabis should also include THC which for many people is very important in controlling their symptoms. It does work and is especially good for helping you get to sleep and create a calm feeling. There is a product I also recommend as I have found it to be very helpful called Mega magnesium by Ethical Nutrients. You get it at Health food shops. It also has Taurine, and B6 which are very calming. Try this clinic. Good luck.caclinics.com.au/australia-...

Amrob profile image
Amrob

Hi Gold, just checking in to see if the medical cannabis is still working for you? If so, what brand are you taking?I'm in WA and was thinking of trying it.

Goldy700 profile image
Goldy700

Hi Amrob - see my reply to Cheehong. I got confused and meant to reply to you. All the info is in that post.

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