I new here. I have suffered RLS since I was l4 years old and I am now 76. I have the misfortune to be very sensitive to all kinds of medications - getting all the side effects and more. The only treatment I have been able to take for RLS is 30 mg. Codeine when going to bed. This used to work reasonably well but does not any more. I have symptoms every evening when sitting, then a gap and then after only one hour sleep I awaken with severe restless - arms and legs - with uncontrollable movement. That continues for 2 hours or more and if I'm lucky I might then sleep again but only intermittently . Last night I just got an hour and a half sleep and this is often the case.
I have just started on CBD oil a few days ago with mixed results. I took the quantity suggested but it seemed to make matters worse. I then tried just two drops and this seemed to work for the evening RLS. I took two drops again before bed but still woke up after one hour with the usual severe restlessness. I shall keep trying and let you know how things progress.
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Jelbea
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Hello again. Its now a month since I tried CBD oil for my severe RLS. Unfortunately this did not work at all for me. I tried the 250 mg. strength and the 500 mg. strength. I had a feeling of calmness which was completely obliterated when the RLS struck as it does daily any time from mid afternoon. A few days ago I had it from 7.00 p.m. until 5.30 a.m. It is not just restless legs but restless everything with arms and legs jerking every 10 - 15 seconds. I took my 30 mg. codeine when I went to bed but this is really no longer effective. I have an appointment next week with my GP and hope he will agree to me having oxycodone as suggested by other members on this site. How are you affected and what treatment are you taking?
Sorry to read about your predicament. It sounds rather familiar, however, as I am sensitive to meds too, reacting to low doses, but intolerant to ‘normal’ doses. I just returned from my gp asking for 30mg codeine, as I have become tolerant to the 50mg tramadol I took since last September. But, I have been prescribed 5mg oxycodon instead, as my gp said the side effects expected of the low dose oxycodon are far fewer than those expected with the rather high dose of codeine. Could you switch to one of these, tramadol (start dose 50mg) or oxycodon ( start dose 5mg)? Or did you try them before and didn’t these meds agree with you?
Btw, I got interrupted by a long phone call while writing this, and now it’s too late to fill my prescription today and I’ll have to wait until Monday 😬.
Anyway, I hope you soon find something that works for you!
Hi LotteM. I just read your post and read that the 50mg of Tramadol wasn’t working anymore. Did you know, obviously your doctor didn’t, that Tramadol can be increased? I take 2 50mg pills per evening, one at 5:30 before the RLS starts at 7 or so, then the other at 11pm for the rest of the night. An adult can take up to 400mg of Tramadol per day but I’ve never heard of anyone doing so, going on the other narcotics will make you dependent and eventually stop helping you. Tramadol has the least record of dependence because it’s a synthetic opioid and not a true narcotic. Talk to your MD about increasing the Tramadol before going on those other narcotics that also upset the stomach, for me, Tramadol has zero side effects other than helping me live a normal life with RLS. Good luck.
Hi Joanna, thank you for the suggestion. But, yes, my gp, my neurologist and I all know about the possible higher doses of tramadol. But - I couldn’t stand them! I appear sensitive to meds, that is, already reacting positively to low/ the lowest doses. But on the downside getting side effects at slightly higher doses. For example, when I increased the tramadol to 2x50mg I got heart palpitations not only during the night, but at daytime as well. And they didn’t settle - I tried for a month! So, that is why. I will probably try rotating my meds as suggested by some people here on the forum and as is suggested in the bookClinical Management of RLS by Lee, Buchfuhrer et al. Will discuss it with my neurologist soon.
Hi Lotte, sorry the Tramadol caused bad side effects for you, it just works so well for me that I recommend it so highly as though I was a supplier, lol.. you said you don’t have a addictive inclinations, however, you don’t but unfortunately the body becomes addicted by itself, I don’t think you can control that. It’s my thought. Anyway, I wish you luck finding the right meds for you, it’s so frustrating and until we do we’re suffering.
I do realise I have become dependent on my meds. Whichever one works at the time. But addicted, i.e. craving the med just for the med - no, I don’t. I still need my daily reminder (alarm on my phone) otherwise I forget to take them.
Thanks for your reply. I was very interested to hear that you are intolerant to 'normal' doses of many meds. I would love to hear how you are faring with Oxycodone as I am hoping I might persuade GP to prescribe this for me. I get so little sleep at night and sometimes no sleep at all about once a week. I find the worsening to all over RLS has been hard to take with the involuntary jerking being very exhausting. Being on this site has opened my eyes to the fact that I might be able to get something to help. I had given up on this some years ago and fortunately the 30 mg. codeine did help for a long time to some extent, but now I might as well eat a Malteser (which might actually be more comforting lol). Hoping to hear how you are getting on and I will be in touch again.
Thanks for your reply of a month ago. I am sorry I did not get back but have had workmen during this time - never knowing when they would turn up - you know how it goes. I had been on the 30 mg. codeine for many years and occasionally I added in paracetamol or co-codamol 30/12 when I got so tired I really needed to sleep! I have never found paracetamol gives me good pain relief even from a headache. I have had a mountain of blood tests taken a week ago and I have to phone to-morrow to find results. I asked for a serum ferritin and I am very interested in the result of this. I have to see GP next week to discuss the blood results as I was pre-diabetic six months ago and I have been losing weight and trying my best to turn this round (30 lb lost so far). I do not know how this GP deals with RLS and hope he is sympathetic to perhaps starting me on oxycodone. Will post my outcome soon
Good suggestions from Madlegs. May I add another bit? Goven my situation, I have been thinking about ‘what and how next’ and had a good read through relevant sections of the book Clinical Management of RLS by Drs Lee, Buchfuhrer, Earley et al. 1) Combination of low doses of two of the main types of medicines for RLS ( dopamine agonists like pramipexole, opioids like codeine and tramadol, and alpha2delta ligands like gabapentin) may work better. Or 2) Rotation of medicines or combinations thereof. Either switch e.g every month or every 3/4 days or even every day. With rotation you may well avoid tolerance, they write. I think I will go that route.
Have either of you (or anyone else using opioids for rls) tried agmatine sulphate as an opioid booster? I looked on reddit when I needed a lot of OxyContin to calm the legs. It was the most frequently and ardently recommended potentiator I came across. I found it hard to tell how well it worked however (I used it for a while - had to order it from USA as nowhere here had even heard of it). I would be interested in your experiences.
Hi ID, and others using oxycodon/oxycontin/targinact/etc.
I just filled my prescription for oxycodon at hte pharmacy. The pharmacist told me to be cautious when also drinking grapefruit juice, as it may increase the level of oxycodon in the blood (that is what is written in the information leaflet) or it may slow down the breakdown of the oxycodon, thus increasing the time the oxycodon stays in the body (that is what the pharmacist told me). Actually, I thought this would be a very useful interaction between grapefruitjuice and oxycodon (and maybe all opioids?), as the grapefruit may help keep the dosis low - keeping the prescribers happy :S - while making the most of the available dosis. FYI!
Thank you for your additional suggestions. I am taking the Mayo Clinic report to Dr. in case he has to be persuaded! I cannot take gabapentin as I was given this some years ago for nerve pain in my face and it caused the start of migraine with aura which I had never had before this drug. I also had other bad side effects. I had pramipexole and unfortunately augmented after three weeks! We are all so different. As I said to Madlegs I will post the results soon. Thanks again.
You should ask your doctor for oxycodone, 5mg. I take one around 7-8 pm, then it wears off at midnight so I take the second one. This process gives me about 6 hours of sleep, even though it's a bit broken up until the second pill kicks in.
Here are my newest experiences : As I have written in another post, I suffered augmentation with low dose pramipexol after taking it for quite some years with mixed results.
So I have now changed ( suggestion of my neurologist) to 1 mg Neupro together with 75 mg Pregabaline - the Pregab. 1-2 hours before going to bed . My goal was to come off the Pregabalin altogether - but as it is, this works very very well. Certainly it is too early to say (only 8 days in this combination).
Interesting for me the post of Lotte M. quoting Dr.Buchführer about low dose combination of two types of medicine. Which is what I am doing right now and I sleep like I did not for years. Though dreams .. dreams
Perhaps I will reduce the Pregabalin to 50 or even 25 and stay like this - together with the 1 mg patch. Or I try the patch alone and see if it is enough.
Very similar to your experience with pregabalin, hausbauer, I have returned to dopamine agonist (pramipexole in my case at 0.044mg) after a dreadful withdrawal 2 years ago following augmentation due to a gradual increase in dose over a decade. I was hoping I could reduce/eliminate pregabalin but found that when I go below 75mg the legs get worse. It seems to be quite effective for me at low doses. Wish it wasn’t in a way because I’d love to get off it. Like you I plan to try again going down by very small increments (I dissolve the tablets and use a syringe to measure my dose so I reduce by 10% every two weeks).
Thank you involuntary dancer for writing down your experiences.
I changed from pramipexol to pregabalin 7 months ago and started taking 125 mg Pregabalin alone. This did not help with sleeping through the night (only difference I could have a nap in the afternoon and watch TV). I did not like the side effects. So I went down in 25 steps to 100 and now 75. I will try to move to 50 just like that. If things go bad I will try your syringe method.
The neupro however seems to make the big difference with sleeping etc. But on the whole I am not happy with all this medicine. Having very high Cholesterol (in the family) I have to take a statin and on top of that, the neupro seems - in my case - to make higher blood pressure (a mentioned side effect). All these four heavy medications (neupro, Pregabalin, atozet and lisinopril) do not really seem to like each other. But we have so little choices.
On the other hand I am 72 and still there . So let's wait and see.
Hi Jelbea. Try chewing spearmint gum. I’m not joking. In my research somewhere I read about the “wandering “ nerve (vagus nerve) and that it runs jaw line behind the ears. I noticed when I was eating nuts my RLS calmed down. So I started chewing spearmint gum. Even when I wake at 2 in the morning within a few minutes the RLS symptoms calm down and I go back to sleep. I have no scientific reasons why this works - just trial and error and I am 80 and have had RLS since my 20’s. I also take calcium, magnesium, B-complex and turmeric. But I was doing that before it was the gum chewing that was what finally calmed my RLS down. Try it - what have you got to lose.
Hello Crazzyleggs. Love the name which describes mine very well. Strangely enough I actually use chewing gum during the night almost every night to help with very dry mouth. It is the sugarfree I use with xylitol sweetener which is the thing which helps the dryness. However, it does nothing for my crazy legs unfortunately but I am glad it helps you. Thanks for contacting me. I am still trying the CBD oil but not with much success. However, I'll keep trying. Most people here seem to be able to take the various drug treatments but as I said I get severe side effects with any I have been tried with. Pramipexole only lasted for three weeks before augmentation occurred, Gabapentin and Pregabalin caused horrible side effects. I am finding it hard to sit still at all now from lunchtime onwards but as I am trying to lose some weight all the movement is helping!!! At least that is what I tell myself.
I haven't been on in awhile but this group is still the best. I still suffer from my legs twitching and those electrical current feelings rushing down to my toes and then the leg lifting spasms. Oy. I am down to .25 klonopin and sometimes I go up to .5mg. Since dx with CLL its the best I can do. Deep bone pain from leukemia in marrow. Sleep is sooooo important for us. I wasn't able to take gabapentin or neurontin Crazy side effects for me. Glad you're here. Wonderful chaps here to chat with.
My symptoms were exactly like yours. I would sleep an hour, wake up, walk around the house for 2 hrs, sleep another hour. Living hell. Someone here suggested John Sarno's book The Mindbody Prescription. I read it, did what it said to do. It took two weeks to work, and I have slept soundly 6 nights in a row. Maybe it will help you as well.
See my above post about medical marijuana. I tried the oils and even the ones with THC only work for a night or two then stop. In my opinion most Cdc oils are not what they say they are and worthless. If marijuana is legal where you live or you can get a medical use card, try it. It works--and works quickly. It doesn't just make you sleepy so you can sleep through it, it actually stops the jerking and nerve sensation.
Hi Sufferingattorney, can I ask what strain of cannabis you use? I use cannabis made into an edible to help with sleep but it doesn’t help with the legs. I have read of others for whom cannabis helps the actual symptoms. It is great as a sleep aid but it would be fantastic to get actual relief from rls from it. Thanks.
Hi guys I feel your pain. I went on a low sugar diet for a few weeks and noticed a big improvement in my rls. Dont know whether it was the sugar or lack of processed food but thought i would share as we rls sufferers will try anything to stop the torture.
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. So let's wait and see.
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