CBD tablets and RLS.: Good morning. I... - Restless Legs Syn...

Restless Legs Syndrome

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CBD tablets and RLS.

atwitsendd profile image
29 Replies

Good morning. I recently read a post about CBD tablets helping this individual w RLS. I asked which brand, type, etc but never received an answer that I can find. If that person reads this please let me know or if anyone else can answer please do. Thank you.

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atwitsendd
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Joolsg profile image
Joolsg

CBD tablets without THC did nothing for me. However, as you will see from reading all the posts, what works for one may not work for another & we all react differently.

Cannabis oil with 20% THC is currently helping me fall into a deeper sleep & the RLS is less likely to wake me.

Cannabis is now legal in the UK if you fit the eligibility criteria, but it’s not free- it costs about £300 all in for 3 months of oil.

atwitsendd profile image
atwitsendd in reply toJoolsg

I'm in the US and I don't believe it's legal here but I'll check it out. Thank you.

Joolsg profile image
Joolsg in reply toatwitsendd

It’s definitely legal in many US states.

disa.com/map-of-marijuana-l...

atwitsendd profile image
atwitsendd in reply toJoolsg

Thank you.

KickininAz profile image
KickininAz in reply toatwitsendd

I live in Arizona and cannabis is legal as long as your doctor does the paperwork to get you a state-issued marijuana card. This topic came up on Saturday at a Halloween party I attended. Several of my acquaintances and family members are using it with great results. They recommended to me that the edibles work best for them. Here you can get 2 ounces (maybe it's 2.5 ounces) every two months I think. My friend said that's a lot of candy because it's the weight of the marijuana in the candy that counts toward the weight. Anyway I have the name of a holistic doctor who is able to prescribe cannabis and I plan to schedule an appointment soon. I'll post here whether or not the cannabis candy works for me.

Jumpey profile image
Jumpey in reply toJoolsg

Hi Joolsg, can you say where you get your CBD oil with 20% thc? I would like to try this.x

Joolsg profile image
Joolsg in reply toJumpey

drugscience.org.uk/twenty21...

Hi Jumpey

I went through twenty21. As you can see it’s for anxiety/chronic pain/MS but RLS would qualify. Ask for a pain clinic doctor as the waiting list is shorter than for the neurological conditions.

Initial consultation is by zoom/internet & costs £99 which covers prescription cost. If they refuse it you get the £99 back.

They then decide which product will be most suitable- oil or vaping cannabis bud.

The 20% THC Oil costs around £200 for 100ml. I use 0.3ml an hour before sleep so cost works out at about £80 a month. It’s expensive but for me, so far, worth it for the deep sleep it gives me for 3/4hours.

It doesn’t stop my RLS but it seems to stop breakthrough RLS for those first 3/4 hour’s of sleep.

I imagine vaping the bud might help RLS when you’re having an ‘attack’. If I can get some in addition to the oil, I’d like to try it.

Good luck.

Jools

Joannebbk profile image
Joannebbk in reply toJoolsg

Jools are you on any other meds or is the CBD the only thing you are using for RLS. Just wondering if they would prescribe it if you were taking other meds for RLS. I am currently on 6oomg of gabapenten and still getting no relief after nearly 2 months of taking it. I have a DRs phone appointment this afternoon but I am at the end of my tether.

Joolsg profile image
Joolsg in reply toJoannebbk

600mg Gabapentin is too low for RLS. Average dose is 900mg at night.

However, maybe pregabalin would work better for you?

I am on Oxycontin 25mg over 24 hours & was on 150mg of pregabalin but have just spent 5 months slowly reducing down to 12.25mg as I actually think it was causing augmentation ( I had started to get RLS in my left arm!) & I know a study from 2015 mentioned pregabalin causing augmentation ( and Alison7 also believes it caused augmentation for her).

Dr Buchfuhrer told me that pregabalin often doesn’t seem to help a proportion of RLS sufferers who have previously been on DAs & experienced augmentation. I think I’m one of them.

You could also fall in that category, in which case opioids might be more helpful.

I would first ask for a higher dose of Gabapentin ( say 1200mg) or ask to switch straight to 150mg of pregabalin as it’s a more effective med. If that doesn’t help within 1/2 months then you could ask for an opioid- Oxycontin or Buprenorphine.

Cannabis oil is sedating so you may find vaping cannabis flower when you get an attack of RLS might be better. Gabapentin & cannabis oil together will make you very drowsy.

As most pain patients will be on Gabapentin/pregabalin/opioids I don’t think there is an issue with prescribing cannabis as well if you qualify.

Your GP has to write a report of all the meds you’ve tried and what you’re taking currently and confirm your medical conditions.

Joannebbk profile image
Joannebbk in reply toJoolsg

Im not holding out much hope with my GP to be honest. I was taking codiene for my RLS for the last couple of years and I had to fight tooth and nail for that. I was actually prescribed Gabapenten from a Locum and then the other Locum prescribed me pramipexole which I didnt collect after reading about it on here. He never even suggested upping my amount of gabapenten and didn't explain the implications of taking Pramipexole. I was only prescribed 300mg a day and over a period of weeks I upped it myself gradually to 600mg. I have managed to source THC vape myself and the first lot I tried really helped as it very much gave me a relaxed feeling in my body. The second batch was mainly a head high which only helped a tiny amount in that I could drop off for about 20 mins to half an hour. Im pretty desperate at the moment but if im honest Im utterly ashamed that I have had to resort to something not considered legal in this country to get a fraction of relief. Im 49 years old and have never taken anything other than prescription drugs up until the last few weeks.

Joolsg profile image
Joolsg in reply toJoannebbk

Codeine, tramadol, oxycontin and pregabalin and Gabapentin are all dangerous drugs open to abuse but because a GP can prescribe them we think they’re fine. Cannabis is a lot safer but has been stigmatised for all the wrong reasons.

If you qualify for medical cannabis and it helps, then it’s no different to other legally prescribed drugs.

You definitely need to discuss the Gabapentin dose with your GP. 300 for RLS is useless.

Joolsg profile image
Joolsg in reply toJoannebbk

I’ve just read your previous posts & you mentioned you became ‘addicted’ to Tramadol. Do you mean you took more than you were prescribed? It may not be possible for you to be prescribed opioids or cannabis if you couldn’t handle tramadol. Did you have trouble getting off tramadol?

Joannebbk profile image
Joannebbk in reply toJoolsg

No I didnt take more than I needed but it stopped working after about a year and it was actually this that I felt started my RLS. I was on other meds, methacarbamol and amitrityline but these were all given for back pain/nerve pain. Actually the amitriptyline was given for the RLS as I also have it in my genitals (it did not work). I was taken off the methacarbamol and given gabapenten by another DR as we are a military family and move a lot. I was like a walking zombie and still suffered with pain and RLS so I weaned myself off all of the drugs myself over a period of months. I was also taking fluoxetine at the time and weaned myself of this too. A couple of years ago I had a flare up of RLS/back pain and was prescribed the codiene which until about a year ago I managed on. I have suffered off and on with RLS over the past year but about 3 to 4 months ago it started to get worse. I suspect it has a lot to do with me going through premenapause.

Joannebbk profile image
Joannebbk in reply toJoannebbk

Just want to add it was hard getting off the tramadol but I did it without any help from the GP. Infact they didnt even know which now I look back on was probably a really bad thing to do. I did it all gradually and the withdrawel made my RLS so bad but I was so stubborn I was determined to do it. I took magnesium and I had salponas pain patches. I also took organic turmeric for inflammation and depression. I went one a few forums to see how other people coped weaning themselves off tramadol. I have gone from a GP who literally threw class A drugs at me to a GP that begrudges me codiene for my condition. Maybe I wasnt addicted to tramadol. I assumed that because my body had got used to it that I was considered an addict but I guess now I really think about it, it was more augmenting than addiction.

Joolsg profile image
Joolsg in reply toJoannebbk

Interesting. Amitriptyline and other SSRI & SNRI anti depressants cause or worsen RLS & any neurologists or doctors with knowledge of RLS know this. Tramadol is the only opioid that causes augmentation so it’s good that you’re off tramadol and Amitriptyline.

Augmentation can cause RLS in other body parts.

I think you should write everything down in a letter to your GP and ask for pregabalin 150mg instead of Gabapentin.

Then if it doesn’t help after 2 months go back and ask for Targinact ( Oxycontin with naloxone for constipation) or Buprenorphine. You can print off relevant info from here and ask GP to read it.

Also ensure your serum iron is above 60 & serum ferritin above 100.

Joannebbk profile image
Joannebbk in reply toJoolsg

I do take B12 and ferrous sulphate 200mg daily ( dont eat meat) also take 2600mg of vegan omega 3 (other one has gelatin) havent noticed much difference since taking any of them.

Joolsg profile image
Joolsg in reply toJoannebbk

Try taking ferrous sulphate every other night as it raises levels faster by fooling Hepcedin (a chemical which blocks iron absorption).

Joannebbk profile image
Joannebbk in reply toJoolsg

I will give that a try thank you. My DR has agreed to up my gabapenten to 900mg and has said that I can increase to 1200mg if needed. Also chatted about other options if this didnt work so all in all I feel much better than I did a couple of hours ago.

Joolsg profile image
Joolsg in reply toJoannebbk

That’s great. Manerva often advises splitting the dose by taking 600mg an hour or two before bed and 300mg just before bed because the drug will then stay in the body longer during the night.

Taking it at night also minimises the side effects of dizziness, loss of balance.

Fingers crossed the higher dose will help, but remember it takes 2-3 weeks to become fully effective.

Jumpey profile image
Jumpey in reply toJoolsg

Thanks so much for this useful info. Can I ask whether you get any side effects or get high from this amount of thc?x

Joolsg profile image
Joolsg in reply toJumpey

No side effects and it usually knocks me out before I get any ‘high’.

Jumpey profile image
Jumpey in reply toJoolsg

Ab fab.x

I have to agree with Joolsg - CBD only oil did nothing for me. If its all you can get it is worth a try especially if you can get a full spectrum CBD oil - it has all the other good Terpines and Cannabinoids except the THC.

As for where to buy it is hard to know - the last place I bought CBD oil - I love Hemp no longer does the full spectrum one as far as I can see.

atwitsendd profile image
atwitsendd in reply to

Ok thank you. I will check it out.

Sampsie profile image
Sampsie in reply to

I am coming to that conclusion too, Raffs. I am going to ask for some THC to be added to my next prescription.

Cowbsky profile image
Cowbsky

hi,

_ I am male, 68, Brazil, retired, RLS since kid. Also an UARS person (BiPAP since two years, wonderful thing) + RLS + Generalized Anxiety

_ Benzo's, even not continously, kind of saved my life and career. Clonazepam in particular, maximum dose 0.7 mg; no significant side effects after some 20 years; I would come back if I needed (cross finger not). Awful experiences with Pregabalin, or Pramipexole (never come back);

_ Some 4 months ago I found out two magical things for RLS, FOR ME. I am afraid most of people in the world are too rational on this and would dismiss them, anyway:

(1) CBD/THC oil (from an ONG in Brazil), 2% CBD (7.5 to 15.0 mg daily in two times), 0.10% THC. It battles RLS nicely, but may have some potential side effects on waking up too early (still experiencing and measuring results);

(2) EFT (Emotion Freedom Technique), in particular the 9 Gamut procedure. Able to battle a crisis within some 15 minutes, I have to repeat procedures all night, though, sometimes before bed (more rarely), most often during crisis around 1;30 to 4;00 in the morning. Kind of adopted "segmented sleep, in two phases" to better succeed on the nights. Recently attended in International Workshop with Dawson Church, on "mind to matter", askind on the possiblity to make good outcomes last longer; keep on struggling on this right now.

all the best and good luck

Cowbsky profile image
Cowbsky in reply toCowbsky

_ forgot something more on my personal experience: It would be very important rule out reasons for waking up at night. I don't have problem on falling sleep (sleep hygiene is enough); problem is staying sleep during REM stages. And, if wake up due to UARS, I have RLS. Still not so clear, but my daily observations on my PAP's respiratory charts, strongly suggest me should I don't waked up due to UARS, I would not have so many problems with RLS.

all the best and good luck

Nightbird11 profile image
Nightbird11

My husband uses Papa & Barkley CBD oil as well as their muscle rub and it’s helped so much. He orders it by mail from their website. Not cheap but it’s so worth it. If the PLMD or RLS is really bad, he may smoke a little as well. The addition of THC seems to make a difference.

Frea profile image
Frea

Hi my name is Frea, I am 75 and have had restless legs for about 40 years.

my regime has been starting with

Clonazapam, then over the years changing to

Slow release .75Sifrol at midday adding Sifrol, .25 before bed

then moved on to add lyrica and codeine while i tried vain to come off sifrol.

This year, June while trying to come off sifrol, and to desperately find some way to sleep.i found a GP who specialises in Cannabis Oil.

I have found the CBD oil has allowed me to sleep without any side effects and ehabled me to come off lyrica and codeine .

I have and do experience significant augmenting in the afternoon and evening until the CBD kicks in and makes me sleepy.

I do hope to come off sifrol eventually... as I feel the augmenting is worse than the rls

Frea

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