Restless Legs Syndrome
9,909 members • 6,091 posts

Oxycontin failure

I have posted this in Pain Concern- but have got very little response - so am hoping for more results with you intelligent lot!😎-- you can follow any conversation there as well.

Hi all- just wondering if anyone on opiates has experienced this phenomenon?

I take oxy 10 twice a day and oxynorm 5 between doses to fill the gap when the Contin doesn't work.

I have found recently that the evening dose of Contin doesn't seem to work unless I take Paracetamol (Acetaminophen ) with it. This only occurs with the nighttime dose- not during the day. I can't seem to relate it to any dietary experience or indeed any cause at all. It has me worried. I actually will wake up half an hour after taking the dose and be suffering awful withdrawal effects ( shaking , restless body , hungry stomach etc) and have to take 500 mg Paracetamol for relief.

Any ideas?

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When you say doesn't seem to work are you saying at all, partly, etc? Can't figure out the hunger symptoms.

Could it be that the Oxy isn't strong enough for evening? Maybe then the pain exacerbates the RLS so taking paracetamol kills a little pain preventing that. I noticed that when I have to urinate the RLS can feel worse with relief after urinating - started to pay more attention after someone on here reported similar do possible other sensations interfere with the RLS experience so to speak.

I have started taking 1g of Paracetamol with my Targinact (40/20) and think it is making it last a little longer. It may only be placebo but I'm happy enough with the results so no looking gift Equus caballus in orifices :)

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I cant help on this, i have no experience on Oxycontin or the oxynorm :( I am intelligent so you got that right, just not about the oxy's. :P

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Thanks to both of you!

I thought Pain Concern would have a wider field of experience with opiates- but should have known where the real knowledge lies!!

Raffs- it's all very odd- I know Para is a potentiater for opiates- and that it is of no help with rls. But my current experience is that after about 30 mins of taking the night dose of oxycontin I can actually wake up in the horrors- no actual pain as such- but more withdrawal symptoms- hence the hungry stomach symptoms- along with full restless body- which I've heard you mention before. Within 30 mins of taking 500 mg Para the whole feeling subsides and I can get back to sleep. It's like the opiate has switched off and the Para kicks it back on again. ?????

No great problems as such , with taking Para- but is this Tolerance - and should I consider an opiate holiday- and how do I go about that- and what next-- Gabapentin or would Tramadol be enough of a different medication to suffice??

Cheers and thanks!

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Seems very odd - especially the all over RLS. Nearly sounds like an augmenting situation. At that time you should be starting to get the effects, have you tried taking it at different times and/or taking both doses in evening see if that changes things.

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The only suggestion i could make is contact Dr. B explain to him whats happening. Ask him if he thinks its a tolerance, if you need to change meds for while, drug holiday etc.

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Thanks Elisse- I was leaving that as final option -- but think I'll have to. A bit frightening- as he has stated that long term low dose opiate use has been the most successful option for rls--- and here I am, not working for me. 😨

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Dont panic, hopefully he will have an answer to your oxy problem. I think its all scarey when our meds seem to stop working for us, as we havent alot of options. :)

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Too true-- Crib Goch was naver as scary as this experience.

( Crib Goch is the narrow ridge on right up to Snowden )

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Well there you go not only forum to learn about RLS and the meds but a geography lesson thrown in too. :)

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Hi, not trying to bug in, but unsure what you mean about low dose of opiate use helping RLS. I've been taking Tramadol, 8x 50mg a day for over 6 years for another reason. But had big problems with RLS, so it didn't help me at all. Sorry, there's no such thing as little problems with RLS. D

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That's surprising- are you taking any other meds as well? Antidepressants and antihistamines generally make rls worse.

Your dose of Tram should be more than adequate to control rls.

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Ok, I'll give you my list, hope you're sitting down. Tramadol 8x 50mg. Gabapentin 3x 600mg. Bendroflumethiazide 1x 2.5mg. Clopidogrel 1x 75mg. Ezetimibe 1x 10mg. Fultium-D3 1x 800unit. Lansoprazole 1x 30mg. Ramipril 1x 10 mg. Tamsulosin 1x 400 microgram. Pramipexole 1x 0.88mg. Now taking Morphine patches, trying to get off Tramadol after 6+ years. Don't think I've missed any, but I'm sure you'll forgive me if I have, but my memory isn't good.D

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Sorry I forgot the Paracetamol. D

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My memory is crap, also take Magnesium, vitamin E and folic acid. D

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I couldn't even begin to investigate all thosemeds or the combinations. But if you google each one " and rls" you may get some interesting insights.

Good luck.

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Don’t matter to me, once I went on pramipexole the rls vanished

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Well I'm dropping to bits and old but happy. Don't care what I take so long as I can keep going

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I know the feeling!😢

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Please let us know what Dr. B says if you do contact him. I’m sure he’ll have some answers for you. Very interesting.

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Bganim -I will- still experimenting with timing. Thanks.

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Hi madlegs,am in a similar situation but eventually swapped to fentanyl patches,now seem to be coming to the end of that solution too, starting to wake up with the old rls...also there is the issue of patches continually falling off due to the intense sweating which also disrupts sleep as bed and myself are wet through.same as you,I thought I had finally found a long term solution and now don't know what next !!!!!I have incredibly bad all over full body rls along with the spasms,am at my wit's end,it's no life xx

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P.s,can somebody explain the paracetamol approach and why rls becomes worse when trying to wee ? Thanks

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I assume something to do with the vagus nerve.

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Don't know about the wee bit.

But Paracetamol is a well known potentiator for opiates--- used quite often in combo drugs - especially with codeine - I think Tylenol and Percocet -( not sure if they are right) When you see a drug given as - say "10/350"- then it will be 10mg of codeine and 350 of Para. It is a useful way of keeping opiate dosage low.

Grapefruit will also potentiate opiates as will alcohol- people have died from unwittingly combined them.

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I did not know that...just rushed to pop some para"s 😁,also just going to say I have learned more on this site and from its members than anywhere else.. ever.,thanks

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Thats very interesting - I had actually thought of Fentanyl- I had reasonable experience with it after my major surgery- but took a long time to wean off it.

I would have no problem going back to it- but don't want to repeat the experience.

Thankyou for sharing- and I hope you get some peace in your journey.

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To be honest I may have speeded up the process by abusing the patch's a bit, probably need a drug holiday but I know of no alternative medication that is effective, having pretty much tried everything over the years x

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what about tramadol + paracetomols that's what I take just before bed, during the day I try to cut my tramadol down, instead of taking 100mg try taking 50mg then just before bedtime try taking 100mg + 2 paracetomols. it seem to work for me, but we are all different, what works on one doesn't necessary work on another I think its a case of trail & error, I have just bought some magnesium,of the amazon & the person that told me about it, works wonders for her but I took it & It didn't do a thing for me, but if you don't try these things you'll never know, like I've just said its a case of trial & error. X

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Magnesium at high doses has been a miracle for me. My rls did get worse for the first 3 weeks but now it has almost cured my rls. You absorb more through your skin than your digestion so I shower with Dead Sea gel, use magnesium lotion and spray allover with magnesium oil at bedtime.

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Hi Lois. What do you call a 'high dose' of magnesium? I can't say it's helped my RLS, but my night-time foot cramps are a bit better, and the circulation in my legs is a lot better. I'm taking Magneseum Malate twice daily.

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hi is there any particular lotion & spray you use. I have just started taking a magnesium but can you tell me once you start taking the magnesium do you stop all meds only at the moment because I'm weaning of repinarole(I have augmentation) I also have to take an opiate which is tramadol 50mg during the day, then before bed 100mg+ 2 paracetomols & if I wake during the night I have to take 1/2mg repinarole.

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Hi Connie andLorrinet

I take Floridex Magnesium ( magnesium glutonate and magnesium citrate 20 ml before breakfast: Dr Salts Dead sea shower gel ( magnesium sulphate) Better You Magnesium body lotion ( magnesium chloride) .Before bed I spray all over with a spray made from equal amounts of water and Epsom Salts ( magnesium sulphate). Which of these is the effective agent I don’t know but, in spite of reducing my Ropinerole from 1.25 to 1 mg I am sleeping better than I have in years.

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thanks for that info.I have a large bag of Epsom salts, know you say to spray this all over you body, mixed with water you still haven't said, are you still taking your meds along side the magnesium,sorry for being a bit naïve, but I need to get it right.is Epsom salts magnesium sulphate?. Once again very sorry. X

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Hi Connieyes, I am still taking Ropinerole but at a lower dose, cod liver oil casulesfor the vit D, and Spatone for iron.

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Yes Epsom Salts are magnesium sulphate

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its me again about the magnesium I don't think I gave it long enough to work, took it again last night,no problems with it this time,must have been having one of my bad days.I think you will try anything to ease the system's of RLS.you will never ever find a cure because there isn't one, wish they were id be the first to try it out.

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Oh Madlegs,

That's a bummer! Like you, I take oxycontin 10mg twice a day and 5mg at about 12.30/1am as the evening dose didn't seem to be stopping RLS. I also take 125mg of pregabalin at night and that seems to help more than the oxycontin.

Have you considered adding a small dose of pregabalin or maybe the odd small dose of diazepam which would counter the "withdrawal" type symptoms? That may resolve the symptoms.

When I was suffering dreadful panic attacks on oxycontin alone, Dr Buchfuhrer was the one who suggested adding pregabalin to stop them and also help sleep. Panic attacks often happen when withdrawing from oxy.

(I still wake up 2 or 3 times a night with RLS in one leg or the other and do 10 mins of pilates type leg exercises with a theraband & that's enough to get me back to sleep for another 1/2 hours. I also take 500mg of paracetamol sometimes when I wake & it seems to help.)

If small doses of diazepam or pregabalin don't help with these withdrawal symptoms then I know Dr B recommends drug holidays for severe refractory RLS where meds stop working. That would mean withdrawal from oxycontin with the help of diazepam ( or Naltrexone- involuntarydancer mentioned that as a help in a recent post) and maybe start pregabalin and titrate dose slowly up to 300mg.

Pregabalin on its own seems to work well for RLS. Then after a few months you could go back on the oxycontin. Following a programme of drug rotation in this way could work and is mentioned in Dr B's book on clinical management of RLS.

Do let us know how it goes and what Dr B suggests. We are all in a similar position - hoping our meds will keep working.

Take care,

Jools

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Thanks Jools- I'm experimenting with changing the times of doses.

Also taking 200mg of magnesium citrate in the mornings and a spoonful of peanut butter last thing at night-- a la Joe Black !😱😎.

My GP put me on Pregabalin when this started - ( so maybe he has Dr B's book!!) But it is quite expensive- and Gabapentin apparently reacts against opiates unless taken 2 or 3 hrs later- bit unwieldy to wake at 2 am just to pop a pill.!!

I'll see how this goes.

Again- thanks to all on this forum who have responded and "liked"- it is very gratifying to have such a community to turn to for help. I feel truly supported. 😀

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Hey Madlegs, where did you the info re gabapentin reacting against opiates when taken together?

I am on a combination of gaba and tramadol. Took resp 20g and 50mg around 8PM, but now add another 50mg of trama as increasing the gaba didn’t change anything. I may have to tease the meds apart.

And what is recommended! Gaba first or opiates?

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Lotte- I can't find the actual article- but the conclusion- which I copied was--

--- shown that Gaba inhibits Oxy if taken within 2 hrs . But Oxy potentiates Gaba by up to 40% if taken before the Oxy.!!

I don't know if that accords with your experience ,or is any help.

Cheers.

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This is from another source- I'm not sure that they are slightly contradictory. ???

Yep if you take Gabapentin before Hydrocodone it lowers its bioavailability but if you take them at the same time then the bioavailability of Hydocodone isn't lowered because it is already absorbed by the time the Gabapentin gets absorbed because Gabapentin has a longer onset and isn't absorbed as fast.

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Hi Folks

I have been loosing the will this last week.I have been on 10 then 15 mg of oxy (on its own) for last 15 yrs.It worked reasonably well to start and for last few yrs I would have to get up 3 to 5 times in the night . Not too bad . Was getting reasonable sleep some nights better than others ,depending on exercise and chocolate oar alcohol intake!This last week however it has been v bad up 8 to 10 times only getting 30 to 40 mins at a time.It is now v encouraging to see you folks are on a combination of oxy + different drugs.This gives me the knowledge and strength to try something else with the oxy(I have to be careful as I have a transplanted kidney!)

Bless you folks for your sharing ! Continue to be strong

I just take the oxy at night as RLS not bad during day when moving and doing

Sincerely thanks

Night watcher

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Madlegs, thanks. That IS helpful. Did some googling yesterday and found mainly info on fora for people that use the meds recreationally. And that info is not very reliable and also often not exactly what we’re looking for.

However, last evening I started with the tramadol 50mg and only added the gaba 2+hrs later. And had no rls! Whereas until 2 wks ago I haf several episodes during te night. Which is why my neurologist afvised me to 1) add morr gaba and if that didn’t work well enough (it didn’t) 2) play around with either a bit more gaba and/or trama. She knows I am very reluctant to up doses, so she thought she could safely give me that freedom. I did take an extra trama last week, which nicely controlled the rls, but made me a bit zombielike and peevish during the day.

So the different timing was very effective! Still some 2h lying wide awake in the middle of the night. That also comes with the rls-package.... The gaba is supposed to help with that.

Shall have to see if things remain like this. I’ll be in touch!

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Oh- I'm so glad it worked. I'm always a bit scared to offer advice outside my own experience- but was getting a bit panicky when I couldn't source the quote.

That's a real affirmation - hopefully it will continue for you.

All the best.

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Hi Madlegs. This is still working well, taking tramadol at 8PM and gabapentin at least 2h later. So, thanks again for the remark that enlightened me.

My daughter-in-law, about to finish her farmacology study, told me the other day this is (should be!) well known. She’ll check it out for me to be sure and send me the info. I’ll make sure to start a post to share that info once I have it.

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That's so great! I will look forward to that info- I still can not find the source.

Thanks for getting back.

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Hi Madlegs, I am very sorry to read of your travails. Hope you find a solution. I haven’t been on the forum so frequently as started back working in September and am finding haven’t got the energy to post. Have also discovered online chess which is an amazingly effective distraction when the legs strike. I find losing a couple of games works almost as well as a few grams of Kratom and will often enable an hour or two of fairly peaceful sleep. I used to be scornful of distraction as a management technique but am finding it better than the stretching exercises I also use as a back-up to the drugs. Am thinking of you somewhere in Dublin and hoping you are peacefully asleep this very cold night.

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Thanks ID - yes, things are going a bit better. I have changed around the timing and taking oxynorm 5 to fill the gap.

I also find a small helping of Greek yoghurt and honey last thing at night seems to help- high fat along with the oxycontin??

Delighted to hear from you again and glad things are going well. Do you play chess against others or the computer? I love codewords and crosswords- and soduko- but hate not getting them correct.

All the very best in your life. We miss your contributions.

Cheers.

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I too love sudoku, particularly killer sudoku, and hate getting them wrong so much that I have been known to draw them out again and work at them in pencil if I mess up the original. However, they don’t seem to have the same capacity for complete distraction from Rls that the chess has for me. So far I generally only play the computer as am so bad - the few times I play ‘live’ I have been shamingly trounced.

Thanks for your comments about missing my contribution - means a lot - really miss being on here too. I don’t have time to see my direct family all that often just now but sometimes feel I miss this forum as much as I do them.

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