I'm back again at another point in my journey! I've gone from DA augmentation and withdrawal to now being on Lyrica at a dose of 300mg. For a month or so I'd slept well and no RL symptoms at all to speak of. In the last four days I've been experiencing some RL symptoms in the early - late afternoon and gone from no symptoms at night at all to two nights of RL over the weekend, possibly due to anti- nausea medication, and last night, was up with RL again, four nights later and have had bad leg jerks this afternoon while trying to meditate.
Now, I know it's early days but I fear I may be augmenting on Lyrica. If I am, then I'm running out of places to hide as I've tried everything. Perhaps methadone might be the only thing left legal that I can try (cannabis oil isn't legal here), and I don't even know if I could get it anyway. Any ideas please.
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restlessstoz
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Ok. Will do. It's awful this disease as it turns me from a really placid and positive person into someone who lives in fear of symptoms returning and going back to the way I was or running out of options for treatment. Thanks for your support Lotte.
Also, if that proves to be the case (the symptoms should stop fairly soon after you stop the medication, I would think), and once your RLS and sleep is well inder control again, you may want to try to find ypur lowest effective dose. 300mg of Lyrica is fairly high for RLS I think. Not sure, haven’t checked the literature and can’t as I am not at home now. One person on this forum thinks she augmented on Lyrica, but otherwise I know of no accounts, thus is seems unlikely. I sure hope you’re not and it proves the anti-nausea meds.
Fingers crossed it's just the sickness meds and you will begin to sleep again soon.Sending love. I know that feeling of worrying that I will run out of things that help.A hard place to be.x
I really hope it’s the anti nausea med. Fingers crossed it settles soon. Alison7 is the only person I know who believes she augmented on Lyrica ( after about 15years). We won’t really know for sure until 10 years down the road when everyone who’s been put on Lyrica instead of dopamine agonists start to report side effects. No one realised DAs caused Augmentation until 10-12 years after they were first used extensively for RLS. I’m really hoping it’s not the Lyrica because I’m on it too.
Thanks Jools. I'm grateful for your reply. I've slept a bit better the last two nights with only waking once or twice and some deep heat and a nicotine lozenge has settled things down quite quickly. I do hope that it will get better again.
It's horrible if a drug taken twice, now, 6 days ago, can upset the applecart for so long! Worth remembering next time I feel nauseous... which isn't often thankfully and it seems is always a reaction to drugs of one kind or another for me.
Thanks for reporting back to us, restlessstoz. I was wondering.... Good to know things seems to settle down. Getting a fairly decent sleep does wonders too.
I don't believe you can augment on Lyrica however you may build a tolerance to it. As a big sister to gabapentin a lot of people on gabapentin need to take more and more in order to get the same results. But methadone is definitely and alternative for me it has been magic. It's the only thing that works without side effects and it works completely without fail thank you God so far.
Methadone is only available over there in the USA. Here in the UK it’s not allowed for RLS. When I asked the ‘experts’ at King’s College Hospital, London why this is so they replied that they have to carry out research ( not allowed to rely on US research) and they have no funding.
The US RLS foundation funds a lot of research but they have thousands of members & charge $40 pa.
We need more people to become paying up members of RLS UK so we can fund research here.
Jools, do you know if there's a RL Australia? I've never read of it and doubt that there would be one. I've Googled and not found anything. The article I found from the Brain Foundation mentioned Levodopa and Sinetmet and suggests that medications can lose their effectiveness over time... NO mention of augmentation at all!
Not that I know of. There are several Australian members on this site and I don't think there is an Australian site.
The USA seems to be 10-15 years ahead of the UK so let's hope all countries start to catch up. It would help if medical schools bothered to put it on the curriculum. it's not taught here in the UK so medical students, who become our GPs, are unaware of how serious it is or how to treat it.
We need to become more vocal and demanding like our friends in the USA.
Hear hear! Maybe we all need to get together in the midst of an attack and show the world what we suffer- en masse! Can you imagine a hall full of RL sufferers mid attack! What chaos that would be!
I'm glad you can get methadone and that it is so helpful for you. I dread the time when/if I run out of options... and that time is very close as I've tried most things. I'm relying on diet, iron infusion - now 7 or 8 weeks ago and from what Graham has said it may be another 6 weeks before any improvement, if there is some. At least I have hope for that long at least. Also meditating twice daily to help reduce stress and anxiety which I know trigger my legs and take some supplements. Even if it doesn't help, it gives me something to be proactive about and helps me feel as if I'm able to try something.
I'm sending you some positive energy. I ran out of options as well. Iron infusions didn't help. Some people just can't metabolize the iron in the brain. Good luck I'm thinking of you!
Methadone? Yea great where do you get it? The doctors run for the doors when you mention it. I am in Arizona and there isn't a doctor here that I can find to give me that for RLS. Even the clinic Barrows neurological said they wouldn't give it no matter how bad and severe my symptoms got. (Even if nothing else works) Sad world. Keep the drugs people really need but give it to drug addicts. Not that there is anything wrong with giving it to them but what about us we are dying without sleep.........
I do hear you! It's awful having a disease that can lead us to the brink of suicide, or over the edge, and not to be able to get drugs that have been proven to help. As you say, it's a sad world.
I'd probably start using heroin if I couldn't get mine. Then go to a clinic. Suboxone works too. Maybe it would be easier to get that? Although Kratom works really well.
I don't think Kratom is legal in Australia. I wouldn't imagine so and haven't looked into it. I did say to my GP I should get hooked on heroin then there wouldn't be a problem. Sad that we have to even think of this option even if we're joking.
Oh bummer. It's legal here in the USA. At least in most States. I have it because the pharmacist makes "mistakes" and doesn't order the medication in time. It's a fill in just in case. But yeah. It's a sad state of affairs.
Could you possibly get to Redwood California? Dr Buchfuhrer's clinic is based there and he prescribes methadone but I don't know how the US healthcare system works. I don't know whether meds prescribed in one state can be taken in another state or if your healthcare would cover it.
I'm in Australia Jools and not financial enough to get to see Dr B. He's been really helpful via email though. I am educating my doctor and we're not doing a bad job given the restrictions imposed by the prescription authorising body in Australia.
That response was meant for btthemd in Arizona - at least I thought I had clicked to respond to him/her. I know the USA has different rules in different states so not sure people can get to see the fantastic Dr Buchfuhrer.
Dr. Buchfuhrer is the best. I started going to him on May and what a difference he has made. He started me on Methadone to withdraw from Primpexole. Right now the Methadone is making me dizzy so he is going to have me try Oxycodone. I haven't started it yet waiting for RX. I live in Northern Ca Humboldt county and he is in Southern Ca and the mail is slow coming here. Will post after I try the new med.
Three days late but just read your post. I take 300mg Lyrica and am up half the night going crazy as my legs won’t stop. My GP says this dose is too much and like you I am now scared because I am out of options. He wants me to go back on a DA but after all the talk here and my own experience of DAs I refused. He is sending me to a sleep clinic at Cambridge Papworth, but what can they prescribe? If they ask me to take a sleep test they will find out everything there is to know about RLS!
As many here say, it’s a terrible thing that DR B can prescribe a known drug - Methadone, and help people but here in the UK we have to suffer. When I see the Consultant in the Sleep Clinic I will let him/her know about Methadone and that I would be a willing guinea pig in any trial. Will report back in September.
Thankyou for your reply camperqueen. I really hope you can get some help after your sleep study.
I am up for the third time tonight and it's only 2.30 am. It's now over a week since I took the anti-nausea drug so I can't imagine its still affecting me. I've had two really bad nights the last two so I'm getting a bit concerned that Lyrica isn't working as it should. I also had RL through the day yesterday and the day before which to me is a sign of augmentation??? What do you think? Anyone....
I am going to a sleep physician tomorrow as the haematologist at the hospital where I had my iron infusion said he wanted me to make sure that any sleep apnoea wasn't affecting my legs. I will end up having a sleep study, when they can fit me in which may be a few months. Then we'll see. Knowing me, I will have a really good night on the night and nothing will show up. Good luck with yours and do let us know what the result is.
You may have more success asking for Oxycodone in the UK. I cannot see you getting the Methadone tbh. Have you tried Dyhidrocodeine (Sp? ) you may get that prescribed x
I just found this article on augmentation and DAs as opposed to pregabalin. According to the article, 'Over the full study period, only 2 percent of those receiving pregabalin experienced symptom augmentation, compared with almost 8 percent of those on the 0.5 mg pramipexole dose and around 5 percent of those getting 0.25 mg of pramipexole. The longer participants were taking any of the tested drugs, the more likely they were to develop augmentation.'
This seems to imply that 2% of people studies did augment on pregabalin. Which is worrying for me at the moment because I'm wondering if I'm in the 2% range!!!
Correct. 2% is a low chance, but it is not zero! Unfortunately 😒. Also, pregabalin and ganapentin have been found to be less effective (or lower chance to be effective) after augmentation on a DA. Big sigh for you. I hope you can get it sorted.
Thanks Lotte. I really appreciate every message I get. It does help. My respiratory physician who I saw today would be totally on my side to fight for cannabinoids or methadone if he could mount a case for me. I don't know if it will come to that but at least I know that he's on my side. He's booked me in for another sleep study in a month but I don't know if that will show anything helpful. At least he's willing to talk about options with me.
Another night ahead and I hope I can sleep... as I hope we all can. I don't know that it's going to happen though...
You do have the seminal paper on opioids for RLS written by the IRLSSG and publiced in Mayo Clinic Proceedings? If not, let me know and I copy the link.
Yes Lotte I do thank you. I didn't have a lot of luck with opioids and ended up with a lot of anxiety and sweats, most unpleasant, and not good coverage for legs either. However, I was augmenting at the time so it may have been a real challenge. anyway, I'll keep it in mind for the future, now that I'm off pramipexole and all DAs. Thank you.
I was on gabapentin as well as pramipexole and some others. When I augmented on the pramipexole, I also went off the gabapentin. I wanted to see a base line of how my legs were. I can try the gabapentin again, if indeed I am augmenting on Lyrica. Without the pramipexole, I may have a chance that it would help.
Sorry, what did you mean by 'If during augmentation or withdrawal the same applies as with the opioids. '?
If you took the gabapentin during augmentation and/or withdrawal, you may have been unable to assess its effectiveness due to the augmentation or withdrawal. Their(negative) effects wil have overruled the potential positive effects of the gabapentin.
Ah, yes of course. I will consider all this and then see where to go from here. I did have a night in bed last night, though a few periods of squirming. At least I didn't have to get up, so I feel a lot more rested though could still sleep for a month!!! I reduced the dose of pregabalin and will see how that goes for a few nights.
Great minds think alike. I have also considered that I might be augmenting on pregabalin. I only started taking it because I developed severe panic attacks on OxyContin. I’d never suffered anxiety or panic attacks in my life and 3 days after starting OxyContin I was hit with overwhelming panic attacks. Dr Buchfuhrer recommended pregabalin because it’s an anti anxiety drug and a sedative so would be helpful.
It has been great but I do suspect something is happening because after 2 years I started to feel RLS in my left arm and hand on a few occasions.
I don’t want to panic too much though. I reduced the dose from 150mg very, very slowly to 50 mg but my legs went a bit crazy. I slowly increased up to 75mg and so far I haven’t had a repeat of the RLS in my hand and arm.
It’s interesting that you stopped opioids due to anxiety and sweats ( I too had that).
Maybe you could try a low dose opioid again because the pregabalin should counteract the anxiety attacks? You could then try reducing the pregabalin very slowly to the lowest dose that works with the opioids?
Often two meds at low dose work better than one at a higher dose.
I am very keen to try a drug holiday at some stage to ‘reset’ all my receptors. It works according to Dr Buchfuhrer but I haven’t worked up the courage to do it yet because it will mean suffering RLS every night again.
I am interested to see how LDN works- someone is trying it out as I write.
Jools, if you do decide to take a drug holiday (though can totally understand your reluctance), that might be a good time to try ldn. I don’t want to be a wet blanket because waad but ldn didn’t help my rls. That said, ldn is optimally taken in the evening whereas I was taking it in the morning (I use Kratom fairly regularly as part of my rls management strategy and ldn definitely interferes with the efficacy of opioids and Kratom - I suspect even the morning dose undermined the Kratom even though I didn’t take it until 12 hours after the ldn). I still wonder if ldn would have worked better if I had been able to take it in the evening.
I have taken occasional (very rare) drug holidays and it does seem to help receptors to reset themselves. Life is completely entropic (not sure if that’s a word but meaning to say disorder and a sort of anarchy takes hold) while on the drug holiday and, for me, it takes a while to settle down even once treatment drugs are reintroduced but you do get that great feeling of being in control once the whole thing is behind you. How long does Dr. B. suggest for the actual holiday?
I think about 4-5 weeks and to be honest that would be my limit! Thanks for that info ID. If I am brave enough to attempt a drug holiday I’ll definitely post about how I cope.
I totally agree. Not for the faint hearted! I don't think I could at this stage so will concentrate on reducing to doses to manageable symptoms and see what that does.
Yes Jools, I too am interested in the LDN 'experiment'. I don't even know if it could be prescribed in Australia but I'm going to look into it.
I will talk to my doctor about the low dose opioid but I suspect he will say that I'm on tramadol and he wouldn't want me on a LDO as well? But I will try.
Last night I did sleep and although squirmed for a bit at three times during the night, I didn't have to get up. Such a relief to even be able to stay in bed for a night.
As will all of us, this is a work in action so see what today and tonight bring. I am reducing the pregabalin so will hope that I see a bit of a improvement in a while. Good luck with the drug holiday! At least you can chose when it will be so you don't have to deal with too much at once.
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