CBD Oil?

[Seaview20]

Hi. Been struggling with RLS for over 30 years but want to stay away from meds as much as possible. Has anyone tried CBD oil? And if so what concentration and dose has worked for you please?

[Brica]

Sea view, I tried CBD for approximately 3 months with no improvement in my symptoms. Have had reasonable response from oral iron supplements, but sleep is still a problem. Am considering cannabis. Brica

[Hidden]

I tried a bottle of it with no effect. I fond the oil with the THC in it is much much more effective.

[Seaview20 in reply to Hidden]

I suspected that might be the case. Thanks

[Hidden]

CBD oil is basically classed as a food supplement, not a medicine, therefore it is unregulated and not standardised.

There is a whole range of products with different contents, strengths etc so it seems almost impossible to state an effective dose.

Additionally how "legal" a CBD oil product is depends on the THC content and where you live. It varies between different states and different countries.

Some claim that CBD oil with higher levels of THC are more effective. That's more likely to mean it's illegal.

The whole thing seems to be a minefield, difficult to navigate.

Some people just use cannabis, irrespective of its legality!

If you unsuccessfully tried all other measures to relieve RLS i.e. correcting any deficiencies in iron, vitamin B12 or vitamin D or magnesium and have eradicated all possible triggers then I suggest you reconsider an RLS medication,

I can understand your reluctance, but overall, I've found it's better to risk the possible side effects than to suffer the chronic sleep deprivation, dangerous daytime sleepiness, irritability, depression and other life quality limiting consequences of uncontrolled RLS.

[Seaview20 in reply to Hidden]

Thanks for a really comprehensive reply, I appreciate it. My GP did prescribe medication but it really freaked me out as it made my legs feel paralyzed but did not remove the horrific urge to move and the accompanying agitation. I take Solpadeine Max most nights because I find the codeine is the only thing that works for me, but I am aware I should not be taking this nightly.

[NormAnnT2 in reply to Seaview20]

I agree wholeheartedly with Manerva’s response. Risk/reward heavily weighted on side of attempting to treat in an evidence-based manner than with home remedies. Optimal iron levels (Serum ferritin) can improve responsiveness to ANY drug and in some cases, can be curative. If you have not already, discuss this with your doctor. When you have the symptoms of RLS, serum ferritin level must be at least 50ng/mL. It’s risky to take substantial amount of iron before you know your levels so do not start iron supplementation before You and your doctor have that information .

[Seaview20 in reply to NormAnnT2]

Thanks. Have been the route of supplements and had my iron, zinc, magnesium levels tested and supplemented where necessary. It has helped but not as much as I hoped.

[Hidden in reply to Seaview20]

RLS meds effects can vary between people. It depends then what your GP prescribed. There's more than just one kind of medication for RLS. Additionally, you have to get the dose and the timing right.

The one your GP prescribed may not suit you, may have been the wrong dose, wrong timing or all 3!

I'm not clear what you mean by legs feeling paralysed. This isn't really a problem if a) they aren't actually paralysed and you can move them normally and/or b) they're not so numb that you can't feel anything.

The main thing is that the urge to move should disappear. If it didn't then it's worth considering the medication, the dose and the timing.

The codeine in Solpadeine will help, but there's not really enough codeine in over the counter medicine, nor perhaps even prescription strength.

You can't increase the amount of codeine by taking more Solpadeine, because then you would be taking an overdose of paracetamol.

But if it helps and you don't exceed the stated dose then no real harm in the short term.

[Shumbah in reply to Seaview20]

As my doctors have said to me girl get your head around the fact that you will be on opioids for the rest of your life . Nothing else is going to control your RLS and it does not mean you are addicted !

There is a difference between abuse and taking medication correctly .

🙂

[Whippetmama]

CBD won't do it for you. You need oil made from cannabis.

[Seaview20 in reply to Whippetmama]

Thanks

[CookiePooki]

I take 5 mg of tramadol every night and have been free of the RLS since. It works for me. I hope you can find something that stops this symptom. It is awful.

[Seaview20 in reply to CookiePooki]

That's useful to know, thanks.

[Bobee in reply to CookiePooki]

did you mean 50mg - I'm not aware you can get such a small dose of 5mg.

[CookiePooki in reply to Bobee]

Yes - it is 50 mg - - not 5 mg.....and it helps me. It has completely stopped my RLS. I hope if you try it it works for you. It works for me.. Thank God !

[Bobee in reply to CookiePooki]

My wife is the RLS sufferer. She found out totally by chance after a shoulder operation that 50mg of Tramadol worked wonders for her RLS. Our GP here in Canada has no problem prescribing it for her. If at 76 she becomes a drug addict - who cares as long as she can sleep every night!!!!

[CookiePooki in reply to Bobee]

I am 74 and I have been using the 50 mg of tramadol for at least 6 months, and no leg jumping or arm jumping. I forgot it the other night and not only my legs were crazy but my arms too......it was horrible....I finally determined that I must have forgotten to take the tramadol. Finally at 4 a.m. I went downstairs and took one and went back upstairs to bed and fell asleep almost immediately. I don't think it is very addictive, but I know sleep is very important, and I haven't ever felt the "need" to have it, if you know what I mean. And, like you, I don't care if I do get addicted. It works for me and without obviously I cannot sleep without it.

[bill54321 in reply to CookiePooki]

I take one tramodol for shoulder pain at night. The gabapentin is capsule for nerve repair and the ropinrole is for the RLS. Each of these medications has a mild sedative effect. I deeoen the later sleep period by 1 cup of boiled bananas strained into a cup with some drops of lemon juice, Have a reason for each and they are not repetitive. Tramonol is the weakest of the RX. I sleep deep, topple off to sleep in about 30 minutes, and get 8-12 hrs sleep unless I drink too much late evening fluids. Then I wake up at 4:00 AM in the morning to pee every 2 hrs. afterwards. My Docs knows about my routine. I do take tramonol 2 times during the day for L-S pain with no surgical cure. I have day jerks and take ropinrole before noon and evening meals. Please do not do this yourself. There is no good literature about day time Jerks(awakeness Restless Leg Syndrome). So, read each others comments and prime your Docs as needed. Mainly, be advocates for your own situations. Study brain barriers and give me your feed back. Stanford U has identified 20 brain proteins. Who in the medical field will ask them to share for essential non intention tremors, RLS, parkinsons, monoclonic disorders.? Maybe the National Sleep Organizations, Neuologist, etc, Even Mayo Clinic could research this. Will they. Ya! How backward our providers are. Stupid? No. Just parrots.

[Seaview20 in reply to Bobee]

Amen to that! Thank you.

[Rescuemom]

CBD offered no help for me but all symptoms have stopped since i take marijuana edibles every night. No RLS and i sleep. Thank God.

[Seaview20 in reply to Rescuemom]

Thank you. No symptoms and some sleep would be bliss!

[CoMtWo]

CBD Oil, as drops under tongue, as part of a surface "rub" or in dissolving tablet form never worked for my RLS. I vape a 50/50 mix of THC (indica type - so that it relaxes vs sativa, which energizes) and CBD oil. Two puffs before bed helps my body relax and the knots in my legs loosen a bit so that with just a bit of effort (vs lots if no pre-bed vaping) my husband can massage the knots out. BUT I don't think it would work at all well if that was the only treatment. Note, I also tried a friend's edibles a few nights - hers were primarily THC I think, since she needed them for her migraines. But I found that I couldn't time them to my sleep time - something others have also found as an issue. Nor the few times I DID manage to go to bed when sleepy 2-3 hours after eating the MJ edible, they didn't help much with RLS.

Unfortunately, at least for me, meds are the "way". After I convinced my sleep doc to increase my iron levels beyond what he considered normal (I was at 54, with the range being 35 to 400 or so, so now have increased to 140), I still had symptoms - but they seemed a bit more under control. But even so, I've been on Horizant, which really works well for me, taking 1 600 mg tablet around dinnertime (with food) every day and since doing so (starting last March), I've been able to sit through concerts/plays/movies in both afternoon and evening as well as watch TV without writhing in place. And I've managed a 10 hour evening flight last spring without going bonkers.

Nothing I'd tried before (even with increased iron levels) could do what Horizant has done for me. I'd been on increasing doses of Pramipexole and Gabapentin for several years before gradually coming off the Pram over 6-7 weeks while upping the Gabapentin to compensate. Then Gab alone at 400-600 mg capsules starting afternoon through to bedtime for 10 days, after which I switched to Horizant. Gabapentin and Horizant are similar but not the same since Horizant is Gabapentin Enacarbil, a slow to release, long-acting form of gabapentin. So even on the days when I forget to take my dinnertime Horizant dose, I can manage through the evening until (just for those "missed days") when I take 400 gabapentin in order to sleep without twitching. That then holds me through the day until I take the 5pm dose of Horizant. You're not supposed to take Gabapentin and Horizant together - so with Horizant lasting 30 hours in my body, if I miss that dose, I wait for 29-30 hours before taking the Gab. Then Gab has a 5.5-6 hour half life so its pretty much out of my body by my 5pm dose of Horizant. But its best not to miss the Horizant - but since I do about 2-3x/month, I've kept the gabapentin as backup.....I guess I'm lucky that this latest med works for me. I'd tried clonazepam for 5 years until that stopped working, then Requip for 2 years until it augmented, then switched to Pramipexole alone with needed gabapentin to work within 1 year or so. And then really ramped up both - until I could reduce them using the Relaxis pad for 5 months during which I tapered to Pramipexole to a maintenance dose at the advice of my doc, keeping 200 mg of Gab as well. But then I started augmenting on Pramipexole again and so rather than adding more in, I got off it entirely - and now with Horizant. I can only hope that keeps me under control for at least a few years. With it, I feel my life is back to being mine!

[Seaview20 in reply to CoMtWo]

Thanks so much for taking the time to help me. That is really useful information.

[Hidden in reply to CoMtWo]

Great to hear that the Horizant works so well for you. Its not available here in the UK, I'm not quite sure why, possibly cost.

[CoMtWo in reply to Hidden]

Maybe see if plain Gabapentin works for you. I turn to that when I miss my 5pm Horizant dose. It wasn't among the initial meds I was offered, rather it was offered to me as I began to have problems with increasing symptoms several years ago after I'd been on Pramipexole (Mirapex) for a while. And, when I tapered off Mirapex/Pramipexole last Spring, I did plain Gabapentin for about 10 days before starting the Horizant - and it seemed to work "as is". I just felt that its short action (5+/- hours) wasn't preferable to the extended action of Horizant and the fact that I travel abroad or away from home for several weeks a year - and for 2-3 weeks at a time, so carrying a huge container of Gabapentin vs a small one of Horizant was also not a preference. On plain Gabapentin, I need 400-600 mg - with starting with 200 roughly mid-day and 2 more mid-evening and then the remainder at bedtime. Not easy when traveling and taking all my other medications (numerous) in a small carry-on luggage along with critical backup clothing, electronics, and trip-related paperwork (often extensive when traveling abroad). Good luck and let me know how things are going.

[Hidden in reply to CoMtWo]

Thank you for your thoughtful and helpful reply.

You are quite right about gabapentin and I have been taking it successfully for nearly 18 months after augmenting on pramipexole.

It would be an advantage to take gabapentin enacarbil instead, but as I wrote, it simply isn't available here.

Gabapentin, for me, has also benefits for the problems caused me by spinal degeneration.

I was originally put off by what I read of the side effects and consequences, but to date, I have not been greatly affected.

[Hagalaz]

Been there tried it. I spent £100+ on some oily stuff that did nothing. Could have bought a couple of bottles of decent scotch with that which would have helped.

[Seaview20 in reply to Hagalaz]

😂tried that but red wine for me!

[Shumbah]

Hi Seaview

Dr Sara Benjiman from John Hopkins institute recommended medical marijuana preferably edibles for RLS

I have but found I need CBD with THC and a fair bit in spray form , small amount if edible.

CBD is mind blowing for asthma attack I use half a dropper within a minute it stops the attack and I bring up huge chunks of phlegm . It must stop the inflammation , when i have a cold I use cbd oil every 4 hours.

Before I used CBD oil i was on prednisone 4 times per year for weeks at a time . Since the CBD I have not used any Prendisone. I started about 18 months ago.

CBD oil is also great for nausea, sea sickness , hangovers . I love it

[Seaview20 in reply to Shumbah]

Wow! My husband has asthma - useful to know. Thanks

[lakersgirl]

Once I started working I got tired very quickly and couldn't concentrate. For this, a friend suggested me to try CBD. I would like to say that it helped me fell into a new sense of clarity and calm that allowed me to concentrate. The Best CBD vape cartridge is available now in the market knockoutcbd.com/cbd-product... Choose your favorite flavor below and enjoy the adventure!

[Seaview20]

Thanks

[Shumbah]

I was at the john Hopkins institute may 2019 and Dr Sarah Benjamin said you THC edibles work better for RLS and spasticity patients it’s to do with it passing through the liver gives it a longer half life if you use it orally you will likely need to get up during the night for a puff . A puff will work more quickly however edibles last longer .

🙂