Coming off Pramipexole with the help of Cannabis oil.

[Lineker]

Hello everyone - just a quick update. I’ve currently done eight nights reducing Pramipexole. My dosage is one and a half x 0. 088mg tablets. I’m looking ahead and trying to plan for the next six weeks. My question is this - does anyone know whether Cannabis oil/gummies can help with the side affects? Any views or recommendations would be most welcome.

[SueJohnson]

Yes they can. Many people have reported positive reports and I am sure will answer you.

[Lineker in reply to SueJohnson]

Thanks Sue, let’s hope you’d right.

[Joolsg]

I inhaled cannabis flower during withdrawal and it did help me. It gave 30 mins sleep after 4 days of non stop withdrawal symptoms.

[Lineker in reply to Joolsg]

Thanks for getting in touch - much appreciated. Sometimes half an hour’s slept is great!

[AnotherRLScase]

I take a gummy nightly with a blend of thc, cbd & cbn. Have found several different brands now that work pretty well. Sleep has been great. Every now and then I have trouble sleeping for different reasons, but rls & plmd aren't it at present.

[Lineker in reply to AnotherRLScase]

Good to hear it’s working for you. Thanks for the information.

[Theonlypetied]

This is my experience of reducing Pram due to augmentation that I am going through right now.

I was on 6 Pram each day. I am now down to 1 .088mg tablet each day. 6 is the maximum dose. Weaning has been hell and I have tried various ways of relieving RLS/PLMD symptoms. I tried…

Cannabis oil gummies. They sent my symptoms into the stratosphere. My friend, however, uses them with great success.

Red Kratom Powder. The hit rate is variable but I’ve found Kratom Tea helps most of the time at a ‘dose’ of 1/2 - 2 heaped teaspoons in 1-3 drinks, as and when required.

Oramorph. Absolute bliss. I found this out due to the onset of Sciatica. Unfortunately, major surgery required a high dose of Morphein and I reacted badly to it and had to stop immediately. The alternative pain killer didn’t help so much.

By far the best way but again not successful every day/night has been to reduce/cut out caffeine, refined sugar, alcohol and carbs. Supplement with 1/2-1 teaspoon of Kratom Tea.

When I ride my motorbike, I am symptom free without any supplements.

When I’m standing, walking or working, I am symptom free.

I should point out that I take 8 paracetamol and between 4-8 Codein per day for Fibro Myalgia. My Ferritin and Iron levels are within acceptable parameters.

Hope that helps and best of luck.

[Lineker in reply to Theonlypetied]

Sounds like you’ve been through it! Great news to hear you are down to a single tablet. Thanks for outlining the different medications you have tried - much appreciated.

[SueJohnson in reply to Theonlypetied]

The motorbike probably works because of the vibrations.

[Theonlypetied in reply to SueJohnson]

I also think it’s the extra concentration and the buzz I get from riding.

[SueJohnson in reply to Theonlypetied]

That's certainly true too.

[eliz45]

I use CBD oil under the tongue every night. They work but only last for 2-3 hours. So you have to get up in the night once or twice. But better than horrible cramps and pain. Good luck.

[Lineker in reply to eliz45]

That’s encouraging. I’m going to start today with some Cannabis gummies. If they remove any layer of discomfort I will be happy. Thanks for making contact.

[eliz45 in reply to Lineker]

Also, I was just thinking. It might be dose dependent. Maybe if l took a higher dose it would last longer. It works so well l can actually feel as my legs start to respond and settle within minutes. If the gummies don't help try the oil. It travels a different pathway under the tongue without using the digestive tract. Good luck.

[Lineker in reply to eliz45]

Once again, thanks for the tip. I love your line ‘I can actually feel as my legs start to respond.’ Wonderful.

[grassgree]

I use Delta 8 tincture; a combination of CBN and THC. It is legal and regulated in this state in the US, even though medical marijuana is not. I don't know why, but with politics these days, one does not expect logic. I sleep 4-6 hours with a 6mg dose from a 750mg bottle solution (the eye dropper measure is 0.25 mL). It takes 60-90 minutes to start working. Dosage information is confusing, but someone on this site was prescribed 10mg by their doctor. The one thing I notice is a withdrawal headache as it wears off, and maybe a bit of rebound insomnia when I quit using. The form I buy is not addictive, but tolerance is an issue over the long haul. If it helps get you through the pramipexole withdrawal period that would seem to be a benefit rather than a risk. Not sleeping is risky on so many levels.

Also note that some people report paranoia with marijuana usage, so if you can buy cannabis legally you want to be aware of that. I haven't experienced that but the level of THC in the stuff I buy must be lower than marijuana.

[Lineker in reply to grassgree]

There is some great information here. Thank you so much. Do you take anything else for RLS, or is it just Delta 8? I think I’m asking - is it possible to manage with just some Cannabis help? Thanks again.

[grassgree in reply to Lineker]

I also take gabapentin on and off. It loses effectiveness over time, so I quit for months and then go again. Right now I'm taking 600 mg gabapentin and have left off the Delta 8. In a few more months the gabapentin will quit working and I'll go through withdrawal insomnia, and then I'll use the Delta 8. Neither method works perfectly, and there are nights with only two or three hours sleep. But effectiveness (and severity of illness) varies a lot from one individual to the next, so if you can get cannabis legally it seems worth a try. Just be careful--we're guinea pigs here.

[Lineker in reply to grassgree]

That’s really interesting; it looks like we all have to work out our own programme. I’m in the UK, so things are a little different here, but your advice applies anywhere in the world. Thanks again.

[grassgree in reply to Lineker]

Yes. This site has been more useful to me than three different neurologists/sleep specialists. Many thanks to the UK and the people who tirelessly reach out to help others!

[Theonlypetied in reply to grassgree]

Well said grassgre!

[dickJones in reply to Lineker]

Where would I get cannabis gummies?

[Lineker in reply to dickJones]

I bought some yesterday at Holland and Barrett - expensive!

[grassgree in reply to dickJones]

Here's a bit of reading about THC/CBD;

healthline.com/health/delta....

Google some of these products or just the letters THC/CBD and see what comes up. There are retail stores in some US states. Don't know if they ship overseas.

[Lineker in reply to grassgree]

Thanks buddy - much appreciated.

[SueJohnson in reply to grassgree]

Gabapentin shouldn't lose effectiveness. When you first start it may seem like that as you need to increase it. At first I found 900 mg worked and after few months didn't. Eventually I increased it to my current amount of 1500 mg which completely controls my symptoms. And I haven't had to increase it since. 600 mg is a very low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." I would suggest increasing it. Increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them.

[SueJohnson in reply to grassgree]

Have you had your ferritin tested? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[grassgree in reply to SueJohnson]

Thanks Sue!