So after many years on Clonazepan I'm finally off all chemicals after moving to Diazepan and now I'm regretting it. I was so fed up with how they made me feel and to be honest I'd forgotten how bad my symptoms are. So after a 24 week weaning process I'm off the meds and have been experimenting with natural solutions with little success. I've tried CBD oil from Holland and Barretts and Hylands Restful Legs tablets and neither works. I'm writing this after laying in bed for 4 twitching and have kicked the wife a few times. Does anyone know of any natural remedies because I've already gone through my cupboards looking for any meds I may have left over but clearly the wife cleared them out. Definitely can't go on like this as the meds stopped the RLS but the side effects sucked but at least I got 4-5 hrs sleep sometimes more. Since getting through the withdrawal my sleep has been laughable. Does anyone have any ideas please
Finally off meds and regretting it. - Restless Legs Syn...
Finally off meds and regretting it.
Many get relief, (myself included) taking gentle iron in the evening to bolster the body's store.
Might be worth googling cannabis or Kratom and RLS?
Thank you raffs for the reply. Do I have to see a doctor before trying the iron tablets
Probably best too. I had taken iron before so knew if I was getting too much. It is very good and a quick search on here will show up lots of info.
Be careful Paul. I have hemochromatosis and taking iron is dangerous without knowing you iron levels. Get a blood test. Rls is a symptom of other health conditions is they I understood it. I hope you and the rest of us find relief soon.
After many weeks - searching and trying this and that nonpharma strategies - I read that Blackstrap Molasses could help. So I took it and it cut into the RLS. It was the first hint that iron was the problem. Mollases has a small amount of iron in it. I then got Ferrous Bisglycinate 18mg and my RLS symptoms went away in a week! My Ferritin level went from 49 to 105 in 3 months. Of course Docs said Fe was normal. But 49 is too low for RLS. So, while my RLS symptoms are under control (and I don't take Fe on a regular basis any more), sleep is still challenging and RLS can flare up at any time. I think constantly just how RLS developed (why was my Fe level so low, what caused it?). It seems every night I have a different strategy to normalize sleep - melatonin, potassium, magnesium, etc. etc.
Thank you for replying I'm going to look into it
In the interest of avoiding dashed hope, I will chime in to say that taking iron in the evening does not provide me with the sort of instant relief the others are talking about though raising my iron levels over time has helped. I have, sadly, not found cannabis affords me relief from my rls though it does help with insomnia. I am hoping eventually to alight on the correct strain.
It's not for everyone but I find kratom very helpful within 20 minutes of taking it and it can be ordered by post without a prescription.
I read recently on here of someone who found that making up a drink with wheatgerm helped their rls straight away. I also read that rooiboos tea can help and apple cider vinegar (I haven't tried the wheatgerm but the others didn't work for me).
Raffs has had success with a vegan gluten and sugar free diet though he might be better positioned to provide information on this.
Magnesium seems to help quite a number of people - either taken orally or in a bath.
For me, a half hour spent stretching gives an hour or two of relief. Occasionally elevating my legs against a wall helps - though less so recently.
But really only prescription drugs afford reliable (or even half reliable) relief for me. I intermittently attempt to do without prescription drugs but am always disappointed. I would never do it without keeping some fall back drugs in the house however - that was ... brave (to quote Jim Hacker, the government minister, responding to a comment by his civil servant, Sir Humphrey, on a proposed new government policy, in 'Yes, Minister': "Brave? As bad as that ...")
My longer reply disappeared somehow. Not doing a full repeat in case it shows up elsewhere, but in short: I’m having a great response to CBD with a little THC. I use a cream, a gel, and an inhaler (not vape). It’s taken 2 weeks to get the right combination of products, the right dosing (different for everyone), and the right timing. For me, it’s working wonders but I think the key is having some THC. No where near enough to get high, it’s such a small %. The consultant I bought it from recommended this 3 point approach, and it’s great so far. I bought the original recommendation, then we tweaked it after a week, and now I’ve got it down. I know how individual it is, but wonder if you were able to get CBD/THC, and were you able to try more than one delivery system, using them all at once?
Hi Mona,
I really appreciate your taking the time to reply - especially as you actually had to do it twice. It's great to hear what is working for others. I can confirm that CBD with no THC had absolutely no positive impact for me. Unfortunately it is not possible to purchase cannabis products where I live in the way that you clearly can. In hope of finding a useful treatment I grew my own cannabis plants - I selected strains that were high in CBD. I make the buds up into an oil with coconut oil (a reasonably complicated process) and I use this as an edible. I find it very helpful to combat my rls related insomnia but it doesn't help my urge-to-move symptoms at all. I'm not sure if I have the right strain. I sometimes use the oil topically for eczema but I wouldn't really know where to apply it for my rls as it radiates down my legs from the small of my back and is also in my arms and sometimes trunk. I would very quickly exhaust my supply to cover all the areas where I get symptoms. I don't think I've heard of inhaled product. I did use a vapouriser initially but it gave me a pain in my lungs which I found alarming!
I’m sorry you can’t get what you need! The pen I use for inhaling is easy, but I did have to learn how to make small puffs, not a big inhale. I have no pain, though the first time I did - simply inhaled too much at once. I was never into any sort of drugs as a younger person, so this is all new to me.
Solpadeine is available over the counter and the codeine in it might help a bit. Maybe you should consider getting a prescription for ldn. Although it doesn't do a lot for my rls, there are others for whom it has made a big difference. It makes me feel a lot better in the daytime so I continue to take it.
Wow loads of info to look into, I appreciate your help
A solution I and a few others have found to work is to avoid sugar and high carb foods. The theory being that sugar is inflammatory, so anything that raises blood sugar is likely to cause inflammation in the nerve endings, and hence irritation. It may not work for you but it won't do any harm and won't cost you anything.
I've also found that the artificial food preservative E202 (potassium sorbate) is a trigger for me. It's found in 'wet' foods like margarines, dips and sauces.
Concur on the sugar, and would add alcohol. One glass of wine and my legs are jumping within 20 minutes (actually just one leg).
I think wine is particularly bad. Other forms of alcohol, particularly spirits, do not seem to have the same negative effect - on the legs anyway - I'm making no observations as regards the liver.
my best solution so far is taking 30mg codeine at some point during the night when i can't stand it any more, regularly getting up and wandering about, having a bath or 2 or even 3 during the night or doing some puzzles which allows the grabbing of the odd half hour of sleep, then getting 3 or 4 hours sleep from 6 or 7 am when the sensation has worn off - but that only works for those not working or when the morning can be sacrificed. and 'sleeping' ( ha, ha indeed ) in another room so my husband can sleep so at least 1 of us isn't too crank!
Thank you Alison7 for taking the time to reply
Wow! That is a lot of up and down.. I'm sorry your go through all of that Allison. I know what you mean about sleeping together. If I am too active my poor baby suffers too...
yes, I like it when the night is over and it's early am when peace may arrive. But thankfully every night i still believe I'll sleep, as until it kicks off i too can't imagine what it feels like - which is why I 'get' why unaffected folk don't understand. Until it kicks in I can't imagine the feeling either and I don't want to try, as then I'd experience it when it's not present. Definitely a very odd condition indeed.
Hi Paul, I’ve had RLS and been on Mirapex for 30 or 40 years (40 from onset, 30 from diagnosis), and have been taking Mirapex that long. Up to .5x4/day. I started on CBD with some THC 2 weeks ago. It took a return to the store and a lilttle experimenting with dose - but I’m now down to 1 o r 2 .5’s a day. My symptoms disappear during the day with 1 dose of CBD, and at night, I take 2 doses and sleep like a baby. I’ve had 2 bad nights in 2 weeks - one of them was at the beginning, another was a couple of nights ago when I was still experimenting with dose. If you can get CBD with a bit of THC in it, I can give you more details if you’d like them. It’s miraculous to sleep all night long.
Thank you Mona23 I'd appreciate any information you can give me. I've heard THC helps so I'll definitely give it go if you can tell me what one you take
Sure! I realized in my comment above I said 1 dose morning and evening - I misspoke, was just thinking of the vape pen. I use a cream as needed for specific locations of symptoms - for me that means top of my thighs, bottom of my feet, and my bicep area. The cream has about 2% THC to about 200% of a variety of CBD’s. It works in under a minute and I usually only have to apply it once or twice in the late afternoon if some symptoms start up.
I also use a gel with a little bit higher concentration of THC - maybe 3%. I rub it on my gums in the afternoon. I’m not sure it’s doing much, but I’m keeping it in the mix for now.
I also have an inhaler, I don’t know what to really call it - it’s not a vape “pipe” it’s more like a pen. I inhale from it in the morning (short inhale) and again in the evening - 1 or 2 longer inhales. I sleep so well, for the first time in forever. No discernible symptoms at night at all.
I’m not being overly exact about dose and brand because what you find works for you may be very different from what works for me (has to do with the combination of our individual brain/body receptors and the many kinds of helpful CBD’s). But hopefully this gives you a place to start. I suspect when I use up the gel I won’t get another. It seems like the cream and pen work best for me. Talk to a consultant if you can, and be sure to get the CBD with some THC. I’ve heard the non-THC products don’t do much for RLS.
I, like Alison7 take codeine. i used to take Ropinirol, but just felt that it seemed quite an aggressive drug for my liking. I came off it, but be aware anybody out there anyone thinking to do the same. I was told it was ok to just stop, but I was literally nearly crawling the walls that night! I started on codeine 15 - didn’t always work all night, but was helpful. I recently found after having been doing that for about 5 years or so that it wasn’t working so well. My GP said to go up to 30 which is better, but what i do is start with 15 and ifduring the night it starts up, I then take another one as it also helps me sleep. If though, I have had a bad evening, then I will just take 30 mg to start with. I would just like to add, that my feet
are more problematic than my legs! Good luck Paul.
Thank you for this, a few people mention codeine so maybe that's a good road to go down
Hi Paul, I suffered with restless legs for 30yrs, I swear it broke up my marriage not being able to sit/ly still whether in or out of bed. All the kicking, flicking, thumping my legs in bed drove him crazy. Then there was trips to the theatre, movies etc where I cldnt sit still, same when having a nice evening in the pub socialising, off these legs would go running twisting on the spot. Holidays oh those holidays where the heat just makes you feel you want to chop off your legs so you can have some sort of ‘normal life’.
Way back when the only treatment prescribed was Quinine tabs which gave me the most unbearable headaches.
Anyway one day a few months ago at my GP medication review i happened to mention my restless legs and immediately the gp’s ears pricked up and she sprung round in her chair.
I know exactly what your going through, she explained she had the affiction when she was pregnant and took a low dose of the Parkinsons drug Ropinirole ie; 0.25mg one daily. She had gone to her gp and he had laughed it off saying it will disappear after the birth, she said I got no mercy from any of my colleagues especially men who were not understanding or sympathetic to her plight. She researched it for herself and took the above dose successfully.
She put me on the same meds/strength. I must admit i had to work a bit to get the correct time of day until eventually i hit the nail on the head, everytime i took my meds at 5pm i had no restless legs at bedtime and slept thro the night. Usually just thinking to myself ‘I hope my legs dont kick off’ would bring it on.
Im now happy as Larry as long as i stick to my 5pm rule. Its all in the timing and never ever forgetting to take your tablet.
Now Paul I know you dont want to go back on meds, but rather than torturing yourself for many more months trying all sorts of stuff, get back to your gp.
If you have previously tried Ropinirole try it again but play around with the timing. If not at least give it a try or ask your gp if there is anything new on the market you can try.
Best of luck to you, I feel your anguish, your not alone.
Alexa
Thank you Alexa I've got a gp appointment next week and I'll bring up Ropinirole. I'm lucky my wife falls asleep in seconds and says I've only kicked her a couple of times which I feel terrible for but she's very understanding. On the meds I did get my RLS under control but hated the general feeling the next day and after years of being held back I had to come off them.
Hi Paul, I can assure you I am on a very tiny dose of Ropinirole and I have absolutely no side effects whatsoever.
I began by taking them in the morning, then before bed but the best time to take them was 5pm so that they take effect before I go to bed and as long as i take them religiously every day and the medication is constantly in my system i have no restless legs at all.
You will know what i mean by saying all you have to do is think about your legs and off they go.
Im sure there are newer better drugs on the market but i suppose its a case of trial and error till you hit the jackpot.
My gp said i might need to increase the dose at some point but theres no signs of that Im very happy and ive been on them for about 6mths now. Being restless legs free has changed my life. I can do anything go anywhere confident I wont get that initial tingle that was the warning they were going to kick off. I am a content happy person now.
It will be worth it when you get the right med for you, its worth persevering to be restless legs free.
Oh and your wife deserves a big bunch of roses🌹
Please let us all know how you get on with your gp.
Happy days ahead
Alexa
Hi Alexa, to maintain the effectiveness of ropinerole long term it is advisable to stick to the lowest dose and when it becomes ineffective, rather than increasing the dose, take a short break to reset your sensitivity to it. If you increase the dose you will enter a race between your symptoms and the drug and you will eventually end up on a massive dose (search ‘augmentation’ On this forum search bar).
It is also very important to get a serum ferritin test - get the actual figure - not just that you are ‘normal’ and aim to get your iron up to over 100. Your GP May have done this already - I hope so. This should prolong the effectiveness of ropinerole. If you inform yourself about this drug you will avoid much suffering later on.
Hello, my Doctor has taken bloods twice in 6 months and everything is tip top.
Augmentation is brought up a lot on this site and I researched it just after I started Ropinirole.
I’m a bit of a Research Freak.
Fingers x’d as I have many ailments Including insulin dependant diabetes my gp is excellent at making sure she keeps a very close eye on me so I feel very lucky.
If my RL came back tomorrow I would be devistated but also very thankful for having 6 months free of this dreadful condition.
Nothing works for everyone unfortunately unfortunately😢
I read stories on here and wish I had a magic wand to rid the world of RL.
I thank you for your feedback and concern that was very good of you to take the time.
I just wish Ropinirole worked for everyone as it does for me😊
Regards Alexa
EDIT: I just realised this post is a year old. Sorry! It showed up on my screen and I assumed it was a recent post.
I have used a mouth spray called Restless Legs Relief made by Martin & Pleasance. It helped but I found I was using it a lot and would go through a bottle fairly quickly. It was about $20AUD. If it is not stocked at a pharmacy near you they can order it in. Other than that I use prescription medication cause it works and keeps me sane. Another thing i've found that can help is listening to very loud music through earphones. It mights seem silly but it has worked for me countless times. Fast paced music eg, fast beat is better than a slow type of song. It has got me through many sleepless nights. I have very low iron and can't maintain a normal iron level. I get out of breath climbing stairs or if i walk to fast so I had 2 iron infusions in september and it got rid of those symptoms but now I'm getting them back again and just had my iron level checked and its way down low again. My platelet level is very high because of this. So I will probably be having infusions for the rest of my life. I'm guessing it plays a part in my rls but don't know really. I take Targin 30 twice a day as I have done my back in and it helps stop the rls but when it wears off my legs get worse. I hope you find some relief.
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