Cannabis vs Big Pharma?

[Symbionforlife]

I'm new here on HealthUnlocked but not new to RLS, having coped with it for approximately 17 years. Mirapex worked but caused issues with back pain and mood, Ropinarole has successfull for me most of the time so long as I don't miss adose. My neurologist suggested I wean off Rpoinarole using Gabapentin(GABA). I tried using GABA over several weeks without success. For me, it even appeared to have exacerbated my RLS and I had to take more Ropinarole and sleeping pills to cope. I've also used Leveladopa carbidpa in addition to Ropinarole and it works as well fo rme too. It has recently been suggested that I try to use some form of CBD oil and am considering doing so. From some of your posts a few say it works for them, others not, yet others indicate using the THC form of cannabis oil provides the best result. Since I live in a legal MJ State I can source about any form available. There are so many and I would like recommendations from successful users as to which form and what dosage I should I should take. The idea of something more natural is very appealing if it can work. Many thanks in advance.

[Joolsg]

Hi and welcome,

From what you say about Ropinirole, I think you were suffering withdrawal as soon as you tried to reduce the dose to switch to gabapentin. Gabapentin doesn’t work while you’re going through withdrawal. That’s why you increased the dose and added another dopamine agonist to the mix- the levodopa.

What dose of both are you now on? The max dose now recommended for Ropinirole is 1mg.

To get off the dopamine agonists is very, very difficult and needs to be done slowly. Reduce 1mg every 2/3 weeks .

Here in the UK (&anywhere cannabis is illegal) you would need a strong opioid like tramadol or OxyContin to help with withdrawal over a few weeks . During this time you would start gabapentin or pregabalin as they take 3 weeks to become effective.

In your case, you can use cannabis or CBD oil to help during withdrawal.

Sadly, I wouldn’t know which strains to advise as we’re still living in the dark ages over here. Cannabis is a class B drug and illegal even for medical use.

I’m hoping one of your fellow Americans may be able to name a few helpful strains.

Let us know how you get on and good luck getting off the dopamine agonists.

Take care

Jools

[Smiffyliz]

I have been trying Bowen Therapy and massaging with a mixture of lavender,rosemary and vetiver oil and have two nights sleep. First time in years

[Hidden]

Cannabis wise I personally thing the full plant is much better than CBD oil.

I smoke or eat it and have tried a wide variety of strains, doses and methods of ingestion. I have found that the high THC strains are better for me. The best I have had is Sensi Star or Strawberry Cough.

In reality it can be very strain specific so the best thing is to talk with the guys at the dispensary and use ones that are good for pain - a good indica which will help you and your muscles relax.

[CORFUORBUST]

Hi CBD Oil is legal here in the UK. I buy it all the time. I started off with the gummy bears and used to eat one per night, but, I cannot seem to find them now. So now I bought 250mg Lovehemp in a 15ml dropper bottle. I make cookies or brownies with it. I put in 3 drops per cookies in a mix (16 x 3) and in the same in the brownies. I use Betty Crocker Gluten Free Mix, as I am coeliac. The brownie mix I cut into 32 1 inch squares instead of the recommended 16. I eat one cookie or one brownie about an hour before bed and I am out for the count. The next time I am only using 2 drops on the cookies as it was too strong for me as they are too hard to make any smaller due to the choc chips in the mix. The brownies however, were fine as it is easy to cut them smaller as it is one tray bake. It is trial and error based on one's tolerance. As a non cannabis user ever before maybe that is why it knocked me out. I kept out only a portion of what I made in a tupperware box and froze the rest in tupperware too. Once out of the freezer they tasted just the same. Hope this helps.

[Jumpey in reply to CORFUORBUST]

Where do you get the Lovehemp Corfuorbust?x

[CORFUORBUST in reply to Jumpey]

Hi Jumpey. I use cbdoilsuk.com. If you send your email to me I can do a refer a friend and you can get 20% discount if I recall correctly. Or I can post on Facebook a general one. My name on there is Brenda Tonia Loughnane. Add me, no worries, I'll post it anyhow for anyone else who wants it. Just message me RLS and I will add friend.

[CORFUORBUST in reply to CORFUORBUST]

Sorry for the long delay replying too, haven't been on since earlier.

[MplsHope]

hi symbionforlife-

I was on Mirepex (pramepexole sp?) for 15 years. In retrospect, I believe my RLS was exasperated after I started taking an anti-depressant (zoloft). Although I did experience RLS infrequently throughout my childhood and adult life.

The first time my neurologist tried to ween me off of Mirepex was when I became unexpectedly (& joyfully) pregnant. The mirepex was un-successfully replaced by a myriad of drugs including opioids. After loosing 5 pounds in my 2nd trimester (caused by days without sleeping and painful nausea) my neurologist team suggested I return to the Mirepex. At that point the harm out-weighed the unknown side-effects to my un-born child.

My daughter was born healthy and she has continued to develop normally 12 years so far.

I remained on the Mirepex prescription for 10 years after my daughter's birth. During that time, I struggled with alcohol, shopping sprees, and chronic fatigue. I changed neurologists 3 times, endured psychological evaluations of my symptoms, and spent a week at Mayo Clinic.

After months of painful sleepless desperation, I began experimenting with CBD oil and THC. At this point I was completely off the Mirepex and struggling through relentless symptoms caused by being off of the drug. It took 6 months to be rid the augmentation side-effects of detoxing, and to get back on to a regular sleep cycle, But it worked for me. I had to experiment with THC strains and find the right CBD oil/MJ balance. Initially, I took this combo most every night before bed. From there, I needed it less and less frequently as my RLS symptoms almost disappeared. I consider it a God-send despite its reputation.

Currently, I take Iron and B vitamins to manage the rare and totally bareable RLS symptoms. My Iron and Ferritin levels are up. I do not take any other prescription medications aside from the iron and vitamin B. This January, I will be celebrating 2 years FREE from Mirepex (alcohol and compulsive-shopping, too!)

I know that there are many unknown factors that go into each chronic case of RLS. And the experiences and results I had may not be what ultimately works for you. Please know that you are not alone in this journey. I hope this information helps in some way.

[Neil46 in reply to MplsHope]

I know nothing of CBD oil etc but reading the above I am so glad you have finally ended your own journey in a happy state. May you have long-term relief.

Neil

[Symbionforlife in reply to Neil46]

Thank you Neil...keeping my fingers crossed!

[Symbionforlife]

Hello MplsHope,

Thank you for sharing your experiences...I will start looking at the CBD/THC avilable products and start the journey hoping I can become as successful as you ave been.

[MplsHope in reply to Symbionforlife]

❤️ I just want to clarify that I was completely off of Mirepex (pramipexole) when I started adding THC. I did however, use CBD oil when weening off pharmaceuticals (there is a more balanced collection of research on CBD oil use). I found the natural hemp extract worked best. RxCBD.co

Most importantly, whether my doctors agreed or poo-poo'd my CBD oil & THC experimenting, I told them up front. Mixing marijuana with the types of drugs used for RLS is potentially dangerous or life-threatening. Tell your physician or neurologist. Easy-peasy in a legalized state.

Hang in there!

[Symbionforlife in reply to MplsHope]

Hello again MlpsHope, Thanks so much for the clarification and sound advice. I will tread lightly.

[Jaywell]

I have never taken cannabis, as it id illegal here and I don't wany to smoke, but my son, who also suffers, does. He doesn't have symptoms when he smokes each evening. I am fortunate at the moment not to be suffering much but it has been suggested by my son's friend I use the cannabinoid oil, ehich is legal, should my symptoms worsen and I would definitely try it.

[Symbionforlife in reply to Jaywell]

Hi Jaywell, good information and more evidence that MJ can be useful for RLS. I'm looking at an oil so I don't have to smoke it...it is a 10:1 CBD/THC. My son uses and has suggested the Hemp based pure CBD oil...something several RLS suffers seem to have had good success with, particlarly when trying to reduce or ween themselves off Ropinirole or Mirapex.

[Jaywell]

I'll have to get some CBD oil my elf.

[CAW20rlsSINCR]

HI I am responding to your mention of Cannabis Oil. I have been taking sinemet 200/50 for about 20 years with relief of RLS with no side effects! But it is going off the market in the world now for about a year-- til next july 2020. I am anxious about not having it anymore. Could you please stay in touch and let me know if the cannabis works for you. I am probably going to have to go on it in a couple of days as all my sinemet will be gone. Let's exchange notes to see what is the best form of cannabis to use for our RLS. Thank you so much.

A man responded to my mention of Sinemet and said my docs were basically out of touch, which was unfair as I have not been back to the Sleep clinic since I was put on the Sinemet CR 20 years ago, And, I had complete success with it. I only recently in the last year increased the dose to 2 tablets at night b/c I have developed peripheral neuropathy in my legs and feet and in my fingers, as a result of a bad skin infection that hurled my blood sugar levels out of whack for about a 2-3 year period-- I found I was gluten intolerant-- not celiac but highly sensitive and no-see-um bug bites started it all. I was put on thallidamide for inflammation, and although it did clear the skin infection which had become systemic, I was not able to prevent the peripheral neuropathy.-- So RLS and neuropathy are a lousy combination but I was so grateful that for the last 20 years the Sinemet CR controlled release was so helpful for the RLS. I cannot wait til it comes back on the market but I need something now. Please do stay in touch to let me or all of us know how you manage with the cannabis. Thank you.

[Symbionforlife in reply to CAW20rlsSINCR]

Hello. From your post you have just a few things going on and its good you are working with your doctor to address them. That is not always an easy task since every one person may have RLS for a different reason and may respond to therapy differently. In my case I had been taking Ropinerol for several years until augmentation began. Following some wise advice on this forum I worked with my neurologist and transitioned to Gabapentin 600-900 mg day, taking 300 mg after dinner and another 300-600 mg before bedtime. Also, I have supplemented with gentle iron to increase my ferritin levels. To your question regarding THC. I attempted using THC in a CBD tincture alone, sans Gaba, and it helped but was not a total solution by itself. I have used straight CBD and CBD/THC oils as a supplement to Gabapentin and find them helpful with RLS and sleep, to the point that most days/nights my RLS symptoms are eliminated. While the CBD/THC is the most robust combination supplement I prefer using either straight CBD oil or one with the lower levels of THC. If you have them available legally you might give them a try and compare the varying levels of THC for their benefit as you experience it. You might find that the higher THC levels provide greater benefit for your RLS. Definitely worth trying.

[duremars]

I'm all in for Marijuana, and I don't like Big Pharma! For those wondering why I don't like Big Pharma, let me remind you that Americans spent $535 billion on prescription drugs in 2018, an increase of 50 percent since 2010. These price increases far surpass inflation, with Big Pharma increasing prices on its most-prescribed medications by anywhere from 40 percent to 71 percent from 2011 to 2015. Pharmaceutical companies’ profit margins receive significant bumps when they launch new drugs, specifically specialty drugs, used to treat life-threatening conditions. This is why I prefer websites like greengoddesscollective.com/ where I can get my favorite products for a decent price.