Augmentation or Tolerance.: How can I... - Restless Legs Syn...

Restless Legs Syndrome
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Augmentation or Tolerance.

raffs
raffs
35 Replies

How can I tell if I am augmenting or the drugs have lost their efficacy?

This past couple of weeks my RLS has been worse with no discernible reason.

I am currently taking 2mg Neupro 40/20 Targinact and 100mg Tramadol. This is supplemented at times with cannabis, yet I am still loosing nights sleep and still have RLS. It now seems to be occurring earlier and more powerfully.

Anyone any ideas?

35 Replies
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Hidden
Hidden

Hi raffs, usually if symptoms are worse and coming earlier, that is normally Augmentation. Tolerance i think would be symptoms returning but not coming earlier and not more powerful. Might have to look that up. Hmmm

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Madlegs1

Hi Raffs- sorry to hear this is happening for you. It's such a bummer- just when we think we have a handle on things - they get out of hand again.

Last night , I was just going through my download history on the phone , and came across an article on augmentation / rebound.

It is by the Restless Legs Foundation dated 2016 on Augmentation.

I'm sure it will come up on Google - I couldn't set up a link. But if you can't locate it - let me know and I'll have another go.

Cheers .

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Madlegs1
Madlegs1
in reply to Madlegs1

rlsfoundation.blogspot.ie/2...

It's in this page - if you can follow it down the rabbit holes.

😆😈

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raffs

I'm hoping I'm being a bit too panicky but this past while - after a right good period, things have gone up the left again. I'm not sure which it is and am hoping its just the drugs, although I hate the idea of going asking for them to be increased.

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Madlegs1
Madlegs1
in reply to raffs

I was on the train to the Hospital for my last 2 replies.

Settled now with drinking choc and macaroon- waiting for Phlebotomy apt.

I know that article mentions that augmentation can come on for a short while and then go away again. Also to look at triggers-- as if you haven't already done that.😬

Tramadol shouldn't augment- but tolerance could be a factor.

How good is your Pain dr?

Is your cannabis of consistent quality?

I know nothing of Targinact or Neupro- so can't comment on them. I think Neupro is a DA- so could that be a source of the problem.?

All the very best. Hang in there.

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Joolsg

Hi Raffs,

Totally understand your concern/fear.

I've just been reading about this in my book ( Clinical Management of RLS by Lee, Buchfuhrer,hening& Allen). They write about drug holidays from drugs that cause tolerance. Basically, continued use of a med causes decreased response to that drug. Stopping the drug for a short time for a drug holiday often restores the meds full potency. Restarts your receptors.

They recommend when restarting the drug to take it at a lower dose to prevent the recurrence of tolerance.

Another strategy they recommend is to take the meds on an intermittent basis, such as 3/4 days a week ( every other day) as tolerance arises due to constant bombardment of the drug's receptor. They refer to this as "mini drug holidays".

Another possibility they mention is rotating treatment, again to give the drug receptors a holiday. ( They even suggest rotating dopamine agonists ( eg mirapex then requip) in this way which was a bit of a shock to read, as I always thought you would augment quickly on another DA).

I know Pippins uses the drug rotation method. She has a regular rotation system where she comes off the neupro patch for a month and then uses opioids for that period. As you are using Neupro and opioids ( Targinact ) at the same time, this may be a bit problematic.

I know involuntary dancer also uses a rotation method where she uses cannabis/kratom for a while then switches to the neupro patch.

However, if you are showing signs of tolerance/possible augmentation it may be your only option. Taking time out from the drugs to reset your body's receptors could work but as we both know, getting off them for even a short time will produce withdrawal symptoms and will be ****. If you have a big supply of cannabis/kratom you could use those for a few weeks/ a month while you tried the drug holiday from the neupro and the targinact.

Sorry I can't be more positive/hopeful but that's the only info I can add to the debate.

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Neil46
Neil46
in reply to Joolsg

Great reply joolsg, I too hope raffs can take advantage of this

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Hidden
Hidden
in reply to Joolsg

Pippins always takes a small dose of morphine and the patch., just she drops the patch and increases her morphine dose while she does the drug holiday for the patch. :)

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raffs

Thanks for the info guys. I have a decent supply of Kratom and was thinking of dropping the Neupro patch, (hate being on it anyway) and adding Kratom.

The usual meds don't hold me and its only with the added Tramadol and cannabis that I get relief so feel like I'm on the loosing side of this battle anyway but this past couple of weeks things have gotten worse and I am trying to see if it is indeed augmentation or just tolerance issues - chicken or egg!

IF things don't change in a couple more days I'll drop the patch and see if I can hold on Kratom and the other opioids. Hope I don't have too rough a time!!!

My GP I think is at his wits end with me between RLS & ME and I really would like to avoid going back looking more drugs as it always feels like a begging match and he is reluctant to prescribe more than the admittedly decent whack of stuff I am already on.

I really appreciate the help and support.

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LotteM

Hi raffs, you are currently taking 3 (if not 4-5) meds for your rls. Forgetting about the cannabis and kratom for the moment, these include one DA (Neupro) and two opioids. The DA’s are well-known for their potential augmentation. Although you are least likely to get it from the Neupro, you still can.

As for the opioids, there are also several reported cases for augmentation on Tramadol: four out of seven people takong it for rls in de Johns Hopkins database (scientific communication by Dr Earley in 2006 if I remember correctly). Shall see if I can copy the text when I have access to my pc again. No recorded augmentation for oxycodon - which is in the Targinact) so far.

Given that your rls is not under control, maybe you should try to get rid of 1st the Neupro and 2nd the tramadol (one after the other) for the “drug holiday” as well-summarized by Jools. And indeed maybe use your kratom and/or cannabis supply and may temporarily up the Targinact to get through. Don’t know what ‘normal’ dose of Targinact is, thus if you have room to up the dose.

I can imagine you hate having to go and fight the battle again. If you will, you know we’re here for mental support.

Wishing you wisdom and strength.

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raffs
raffs
in reply to LotteM

You are right 3 meds prescribed and still have trouble. The Targinact is at 40/20 and I don't want to take above prescribed dose as I will run out early and I don't think "I needed more so took more" will wash with the Dr.

It is so bloody frustrating that I am perpetually on this merry-go-round that is anything but merry :(

I've some peace at the moment after a rotten day and I'm hoping the night will pass quickly.

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Lindy14
Lindy14
in reply to LotteM

Hi Raffs,

I must between them all, You got some good ideas and I support LotteM's reminder that we're all here to provide some support. What you said about your GP being at his wits end reminded me of my GP. He'd referred me to a neuro for advice as he said he didn't know anything about RLS. After starting treatments I eventually got something that worked for me, but after a few months it lost its effect so the neuro increased the medication and again it worked but lost effect again. We upped the dose again to what appeared to be the maximum dose for RLS and again it lost effect! The neuro said she was trying a higher dose and said that this was what she felt could work with the other RLS medication, but said that if it lost effect again I was to insist that I be referred to her again as she wanted to supervise the change in meds.

So far the cocktail I'm on is doing the trick and it's effect has lasted for nearly a year, (I'm terrified that by saying this I might tempt fate). However, she sent me a copy of the report she sent to my GP and also a copy to me so I could use something she has put in writing should the GP start playing awkward. I feel better for that. You could explain your concerns to the neuro if you can get referred to one for assistance and make sure you get a copy of any report written by the neuro about your treatment. It's useful concrete evidence.

But I echo LotteM's words about us being here as support.

Lindy14

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raffs
raffs
in reply to Lindy14

Thanks for the reply LIndy14, my GP was reluctant to mess around with opiates after I had stopped them myself, (they had lost efficacy and in a fit of annoyance I stopped all drugs). I had to see a pain specialist and then he was happy to tinker again.

I know Drs need to concern with misuse of drugs and what not but surely suffering constantly is a bigger problem than the drugs.

If I was a single man with no responsibilities I think, scratch that - I KNOW - I would have left the stage long ago, life is for living and I am doing precious little of that.

I hope the drugs you are on keep working - long may your body tolerate them.

Best of luck.

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LotteM

Hi Raffs, Sorry to hear that. Would that even not work if you say that you - after getting rid of the Neupro - also want to (or need to) get rid of the tramadol? That would be a bit of trading one opioid for - an increasing in - another one.

For now, here's the relevant excerpt from the text from the communication by Earley & Allen from 2006 (Sleep Medicine 7, p592–593):

"We have complete, consecutive data from all clinical patients seen from January 2000 to the current date. In that data set, we have identified nine patients who at some point in their clinical evaluation by us were on tramadol. The clinical charts for all nine patients were reviewed. Two of nine patients had been on a PRN dosing schedule primarily for arthritis for several years without problems [so they don't count - Lotte]. The remaining seven were given

tramadol to treat RLS symptoms. Two were only on tramadol for less than two months when it was stopped because of ineffective treatment response for RLS. One of the nine patients had been taking 50 mg at bedtime for the last five months with excellent symptomatic relief and no obvious worsening of RLS symptoms. However, the four remaining patients who had been on tramadol for management of RLS symptoms were taken off of the medication because of the development of clinical signs of RLS augmentation. Three were on a maximum of 100 mg and the fourth was on a maximum of 300 mg/day of tramadol at the time the medication was stopped. Three of the patients had been on medication for about 2 years, and the fourth patient had been on medication for about 4 years. All four patients had fairly classic symptoms of augmentation..."

In sum, four out of seven on a dose of 100 mg/day or more. Small sample size.... I think there is one more written/published paper about augmentation in a 80+-year old woman on a dose of 400mg/day or more after quite some years... Some evidence, but not much to go on.

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LotteM

An afterthought... have you ever had gabapentin or pregabalin? I now know of quite a few people - here on the forum and in the real world - that use a combi of low doses of one of those together with an opioid. The gaba/pregaba is supposed to help with the sleeplessness.

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raffs
raffs
in reply to LotteM

Had them for pain with little effect but was thinking about looking them again for RLS. My pain issues are reasonably well contained and I can tolerate pain more than the restlessness.

I'm prescribed the Tramadol for pain but only take it for RLS, didn't think it would be the likely culprit until reading that post - just what I need - another drug to cause problems.

I have other health things going on and am very reluctant to go back to the Dr for an increase but think I'll have to go armed with all the info I can gather and hope for the best.

A big Go raibh maith agaibh to all across the globe helping out. If nothing else sometimes its nice to know there are others that know what you are going through, thanks.

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Madlegs1
Madlegs1
in reply to raffs

Slan.

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Neil46

Hi raffs, please forgive me for going on a bit about LDN. Especially as I have no personal experience of it but I have become a member of the LDN Research website and have found plenty of evidence for and against but have had online conversations on other sites with people who have gained much relief (and gone back to work!) from Fibromyalgia and Restless Legs and anecdotal evidence from sufferers with MS. As we have already discussed LDN is a b****r to obtain but this video is well worth watching I think and explains supply.

vimeo.com/131314110

Best Wishes, keep strong

Neil

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raffs

Absolutely no forgiveness needed, I wouldn't post on here if I didn't want help. I look forward to learning from the video.

I have been reading up recently on LDN - flowergirl I think, had stuff up and coincidently I got talking with a mate whose wife is using it and getting good results for fibro so am beginning to look more in that direction. There is a Dr in Dublin doing it at a very reasonable rate.

Thanks for the thoughts Neil, much appreciated

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John_naylor

Hi Raffs, hope you find your way thro’. I am asking myself exactly the same question about Tramadol. It has been my saviour for over 2 years now but has lost effectiveness and I now have symptoms in my hands as well as arms and legs and sometimes in the afternoons. Hate to admit it but it is classic augmentation. Can’t imagine coming off Tramadol, but am going to ask GP for some Gabapentin and see if I can reduce the Tramadol. Am still trying exercise as per workshop at AGM, cutting down on sugar (10 days into this) and cutting down fruit intake next. Seeing your list makes me realise I am not too bad (yet!).

Good Luck

John

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raffs
raffs
in reply to John_naylor

Thanks John, although I am thinking its the Neupro that's causing the problems.

If its any consolation I came off tramadol cold turkey once, and managed it...just! I also had to come off after ending up in hospital and it was actually quite interesting - I was really spaced coming off it and apart from the RLS and pain it was quite enjoyable :) Mind you a proper withdrawal onto something else is by far the best route, best of luck with it.

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raffs

A little update:

Stopped the patch, had thought of cutting down but thick headed creature that I am I've stopped. I managed on cannabis and distraction during the day and since up at 4 am I've tramadol and some cannabis while I wait for it to take effect and so far I'm feeling better than I have been so fingers crossed it continues.

Thanks for the help in getting this sorted.

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mantel

This may answer your question Raffs -

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raffs
raffs
in reply to mantel

Just a bit into this and quite interesting, thanks for posting.

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raffs

I just lost a big reply :(

Anyway I am too tired to type it all again but long story short:

I've managed to stop the Neupro and tramadol, (yeah me :) ) and have cut down on the cannabis I was using so am absolutely delighted at my progress - after a really crappy few weeks things seem to have turned a corner.

I've had two reasonable days & nights and am hoping this will last. I am far from at peace but considering the drop in drugs I am doing great. I am thinking a bit clearer and have a little more energy so that is helping to motivate me.

I'm only about half way through the video mantel posted but would highly recommend it.

I want to express my heartfelt thanks to all for the advice and support, this site is a big asset for me and I appreciate the time and effort people take in replying.

Go raibh mile maith agaibh gach daoine.

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Hidden
Hidden
in reply to raffs

Hey Raffs!

That's awesome news!!!! I think being over-medicated is a real thing, so I'm glad you're taking care of that. I'm currently on that path as well, whereby (through psychiatrist guidance) I am coming down on my antidepressants. I just started on the lowest dosage of one of them (yeah, one -- my US psychiatrist was pill-happy, resulting in me moving to Norway on enough pills to flabbergast my doctors here). I am set to get off it altogether in one month!! I must say, I do feel better since making that change two weeks ago.

Congrats!

Take care,

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Hidden
Hidden
in reply to raffs

Someone recommended that video to me as well (awhile back now). Very imformative, isn't it?

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raffs
raffs
in reply to Hidden

Thank God things are improving. My first thought had been to increase the drugs but with the knowledge gained here I knew about augmentation and then I reduced.

Just hope I'm not speaking too soon.

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John_naylor

You are quiet, still ok without patch and Tramadol? I'm still increasing Gabapentin and hoping I can reduce / stop the Tramadol as I have perhaps been augmenting like you. Hope you are doing ok.

John

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raffs
raffs
in reply to John_naylor

Hi John, thanks for the concern. I am doing fantastic all things considered. I over done it and my ME knocked me for a couple of days but am coming round. RLS wise I am doing very good - didn't have the energy to smoke any cannabis one day and wasn't that bad.

I am nearly certain that if I can get a good break from these drugs, (and maybe even reduce the Targinact), I can return my RLS to just my legs - I am convinced that the move into torso and arms was augmentation that never got a proper chance to resolve, as opposed to natural progression - well telling myself that any way :) .

How are you managing the increase in Gabapentin? Noticing any side-effects? What about the RLS been any shift?

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John_naylor

From undisturbed sleep 3 months ago (just on Tramadol) I am normally up 3 or 4 times a night. Have had some nights of no sleep and countless attempts to get in bed recently and am still ramping up the Gabapentin. Have been testing Magnesium spray, reduced tea, reduced sugar and getting Ferritin tested so not clear what is affecting what. Aim to follow you and get off Tramadol if Gabapentin works ( third time on it). Good luck.

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raffs
raffs
in reply to John_naylor

Hi John just thought I check in - see how you are getting on?

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John_naylor

Just had to get out of bed at 8.00 as RLS going wild, up 5 times in the night, I think, bit confused. Woke in front of tv at 6.00 and that’s kicked off a migraine. Apart from that great! Am at 3x300mg Gabapentin, my maximum, with no real side effects yet, and am dropping off one Tramadol. Tried 2/ day - 1/ day - 2/day as not easy to halve these things. Just done 2 nights with 1 only but will probably go back to 2 tonight as I need a rest. Knowing you are getting ‘clean’ and feeling better will keep me going. Thanks and good luck.

John

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raffs
raffs
in reply to John_naylor

Well so far things are good, (although Restlessness forced me out of bed at 5.30 after spending an hour squirming.

I have cut down on the cannabis quite a bit - have had none since 7pm yesterday (hence the bad night) - and intend to keep it reduced.

My bad nights are no worse than when I was taking all the drugs I was so am still very happy with the way things are going. I feel more at ease and things don't wind me up as much as they did. I think the DA was doing a number on me and I didn't even realise it - its made me more determined to get off as much prescribed medication as I can.

I take a moment each day to be thankful I got the right advice and support on here, otherwise I would have been creating a bigger problem.

Stick at it John its all doable. Take care and best of luck.

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darena

I had severe RLS - 4 episodes every day -I took a litany of drugs but nothing worked except pain killers. This is a bad road to be on. After 9 years of total misery I bought a 'Relaxis' pad. It was designed by a doctor who had RLS. To my surprise it worked. The people at 'Relaxis' are extremely

helpful. After 2 weeks of instruction I was pain free. I have been pain free for 3 months now and need to use the pad only once every week or two. I am drug free except for Lyrica and I am weaning myself off this. Good luck! The pad is expensive but worth every penny.

Daren

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