As some of you will have seen from my earlier posts I had succeeded in blocking RLS (after DA augmentation 7 months ago) by use of buprenorphine patches and tablets but have had to take action against some very severe nausea which appears with both tablets & patches.I also experienced a similar nausea when using co-codamol at an early stage of RLS treatment.
Zofran (the favoured anti nausea drug) has not helped my nausea and now in my 8th day of use
I decided try try sublingual buprenorphine tablets again and removed the 5mcg/hr patch. Instead on the first and second nights after removal I took just one 200mcg tablet result No RLS but still severe nausea. Last night as i felt RLS breaking through I took a second 200mcg tablet on getting into bed but the total of 400mcg did not stop RLS getting through and I have now had to take a third tablet to see if the 600mcg (equivalent to a 10mcg/hour patch ) will get me back to square one! it is 2-30am and I also think i am experiencing opioid withdrawal as getting cold alternate hot/cold sweats.
Does anyone think I am analgising the situation incorrectly or can you suggest my next move? I have doctor's appointment on Tuesday afternoon and will ask him about alternative anti nausea drugs or alternative opioid eg naltrexone etc. joolsg advised me to try cannabis and this may well be my only other option?
I could go back to oxycodone/naloxone (Targinact) which gave me nausea but less severe and the RLS barrier was "weaker"
i hope someone can help please
Kind regards
Davchar
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Davchar, I truly wish I had an answer for you but I am afraid I don't. Your experience sounds truly horrendous. I will say that I have experienced the cold and hot sweats as well and I don't think I was suffering from opioid withdrawal. I chalk it up to one of the side effects of the Buprenorphine.
I truly hope you find some answers and relief soon.
I'm so sorry you're suffering. I haven't experience of buprenorphine so can't help with that.But as you say other opioids are available if your experiment fails. I take morphine successfully. Good luck.
Davchar, you may have to consider giving up on buprenorphine. Discuss with your doctor (neurologist?). You may even try to get some information from the pharmacist. The most obvious option is switching to another opioid, and you mention oxycodone/naloxone, but do ask about others, specifically methadone. Bring a printout of the May Clinic algorithm. Also, have another test of your iron and ferritin status to be sure. And I don’t know about your previous experiences with gabapentin or pregabalin.
It seems you may have to go back to square one, and I am very sorry you are in that situation. You know much more, but that may make it more difficult to find a good solution. Your doctor will have to apply a very patient-oriented and personal approach. Anyone knowledgeable in your close circle that can support you?
I think you are right because all my experience says I need between 5 & 10mcg/hr (as a patch) to block my RLS and this amount causes intolerable nausea especially in the early mornings.
It is also clear that either my DA augmentation withdrawal is not yet complete (after nearly 7 months) or my dopamine receptors have been permanently damaged because when the RLS does break through it is still severe.
I will post what my plan is later but in the meantime thanks for your support & concern
Thanks your reply..appreciated. Iam lucky with my GP/doctor who although he will not go near methadone (like 99% of GPS in UK)but he will (unlike 99% of GPs in UK) "research" meds and buprenorphine side affects etc.
He has asked me to keep on with Zofran as he said he could be wrong on the length of time it takes to "quell" bupre side effects such as nausea . he wants me to stay on as small as possible patch with tablet top up until we have exhausted his ideas for anti nausea drugs.
So that is tonight's plan ie leave the 5mcg patch in place and top up if sign of RLS break through.
Do you know of any powerful (ie Not OTC) anti nausea drugs?
i will keep you advised of my progress but in the meantime thanks and regards
Sounds like you have a good gp. And, no, I don’t know about nausea meds. I hope your gp is right and it will settle soon. And if not, that he will look into other meds/opioids he can prescribe. Did you give him the Mayo Clinic updated algorithm? Also, the latest paper on the opioid registry by John Winkelman gives a good overview over opioid prescribed for RLS. ncbi.nlm.nih.gov/pmc/articl...
I am currently in a mixed up place because of my attempts to not only block RLS but also reduce my nausea.
i think that in trying to get the nausea under control i have lost sight of the key objective ie to block RLS. i suspect in the early days of my use of Buprenorphine i needed between 10 & 20 mcg/hr patches to block (ie 0.24 to 0.48mg/day) I remember exchanging information on this forum as to how long a patch lasted and that the patch didn't start to "work" for up to 24hrs after fitting? Then changing to tablets to try get a better idea feel for how much Buprenorphine I needed. Then reducing amount to try alleviate nausea.
Basically I do not believe I have ever reached a point of knowing what my stable meds are! After a bad night last night i have just had a 5mcg/hr weekly patch on all day (2 days into it's "wear". When RLS started abut 8pm i took half a 200mcg tablet. no effect by the time I went to bed at 10-15pm so i took the other half and I am currently (midnight) thinking about taking another half a tablet.
If we assume that a 2 day old 5mcg patch is fully effective and therefore my blood will have at least 0.12mg of bupre built up plus 1.5 x200mcg (ie 0.3mg)tablets that should give me a possible 0.42mg currently present and perhasp not quite enough if original requirement was 0.48mg/day?
So I going to have to restart my plan B to stabilise my meds and would appreciate any comments on above please. Kind regards
How did the nausea , for which you use Stemitil, arise was it from use of an opioid to block RLS?. I block my RLS with buprenorphine and suffer severe nausea for which my GP is using Zofran to , in vain, treat.
Mine is a long story as I have terminal cancer. I use the anti nausea for chemo side effects and also migraine nausea. I may be having to try the buprenorphine to supplement the Nuepro patches towards the end of my life as I have left it too late to do the withdrawal. I really wish I had done it last year when I was first diagnosed. I wish you all the best with stabilising your drugs. I am sure you will get there. I feel for those people who are not articulate enough to discuss various options for treatment with their doctors. We need to be our own advocates but I’m sure that’s not possible for some.
Thank you for your reply and i am sorry for your situation.
Yes i agree .......I am fairly articulate but even so i got into a very severe augmentation through being over prescribed Neupro and ever since finding this community have been working on my local GP to fight the case against dopamine agonists.
I’m sorry you’re suffering with nausea. When I first started taking. buprenorphine, I had some nausea as well. I guess mine wasn’t as severe as I just had to change what I was eating, gives up some things, and always keep some in my stomach. This wasn’t great for my weight, but it helped to have food in my stomach at all times.
davchar23, I’m so sorry to hear the sublingual zofran didn’t work. I understand the disappointment and concern you must be experiencing because I have been there. I severely hope you find some peace.
I have been away looking after my mother Dav, so sorry for delay replying.It seems that the nausea is overwhelming. Was it less on pills or the patch?
If you don't want to switch yet to another opioid, bearing in mind they all seem to cause nausea, you could choose to spend 3 weeks on whichever Buprenorphine you prefer (pills or patch) and NOT switch to the other version to avoid mini opioid withdrawals, which do cause sweating and nausea.
I think the constant switching between patch and pills has been counter productive because you can't exactly match the dose, so mini opioid withdrawals will occur.
I don't know why you are so reluctant to try medical cannabis. It is now legal in the UK and is prescribed by a doctor.
Chemo patients use it, usually because Zofran doesn't stop their nausea.
You only need to try a small dose of 0.2/0.3ml at night. Any 'high' kicks in around 90 mins later, when you are asleep. You could then use 0.1ml in the day to stop daytime nausea, and that shouldn't cause any high.
So, switch to pills alone and use for 3 weeks with medical cannabis.
If the nausea persists, you are clearly not suited to opioids and could then go back to Targinact and accept the less severe nausea, but increased RLS.
Or, as SueJohnson mentioned, you could trial methadone. Maybe that would cause less nausea for you.
Dr Jose Thomas in Wales and Professor Gavin Giovannoni at Bart's in London are two doctors who prescribe methadone. So it is prescribed by specialists.
I know your GP is very helpful, so discuss fully with him/her and devise a plan for the next month.
I had a long chat with my GP today after which he has asked me to continue with Zofran for another week. He said although his experience tells him it should work in the same way as it does in surgical situations (ie 1-2days) he accepted my statement that our site's expereince for RLS was longer (good for him?). If in a week I still have severe nausea then he will try alternative anti nausea drugs but he wants to continue with buprenorphine now "we" (good for him again?) have got forward on that. He would not discuss methadone and was a bit reluctant to recommend probiotics and other OTC options. incidentally my own neurologist Dr Roswell martin (Ramsey, Gloucester) also suggested methadone but i have not checked whether he would prescribe it.
I believe I get slightly less nausea on patches but not really significant. I understand and agree with you (and others) who say it is not really a fair rule to simply divide by 60 to get from tablets to patches and i am sure i have made things worse by "messing" about with switching so i will stay with 5mcg/hr patch and a top up 200mcg tablet (as necessary) because I believe I do not need 10mcg/hr and GP says not to cut the patches. I am however tempted to try!
I am not eliminating cannabis from the longer term plan but want to fully explore buprenorphine first as it seems a "popular" solution?
I believe i am lucky to have "converted" my fairly young GP to our research!
Thank you again and will let you know how I get on
Hi , Im also under Dr Roswell Martin and seeing him again soon . Off Ropinirole since Nov now and taking Gabapentin and Targinact. Days and evenings are good but night time is terrible with crazy legs and little sleep .Dr Martin said he has prescribed Methadone in the past . He was reluctant to give Buprenorphine due to lack of research so I have printed off loads and hand delivered it to his secretary. Ive got to have something or I will go mad ! Good luck
Good morning. Unfortunately I think that Dr Martin is a little behind the times when it comes to latest RLS research. As far as Methadone is concerned my GP would not go near it and said if i wanted it Dr Martin would have to prescribe it. Fortunately buprenorphine works for me except for the nausea side effect. Targinact (oxycodene) only worked at a very high dose and at that level the side effects were intolerable.
Please let me know the outcome of your evidence drop. i assume you have accessed the latest from American Sleep Academy on buprenorphine issued posted by recently by Joolsg?
No I will have a look now. So how much Targinact did you take ? Im taking 20mgs a day , I couldnt tolerate it at first but fine now. Who prescribed your Buprenorphine ? I dont think my Gp will . Im actually seeing Dr Martin on the Nhs now so at least my prescrip will be free ! I presume if he puts me on it , my Gp doesnt have to prescribe it as its on their red list apparently. Had 3 hrs sleep last night so feeling rough today. Rls just wrecks your life doesnt it ? Sorry for all the questions !
Good morning and hope you had a better night. I wonder if you saw Dr Martin privately armed with all the evidence (especially the latest from American Sleep Academy guidance on buprenorphine) you might get him to support it. I know it's use varies from GP to GP.
On oxycodone I needed 30mg day to have any effect on RLS.
No a bad night again but slept from 8am til 11am which I hate doing .Dr Martin has all the latest research on it because I took it to the Winfield or whatever its called now! Who prescribed your Buprenorphine Dr Martin or your Gp? I havent had a nights sleep in well over a year and I cant take much more . Take care and thank you for replying
Sorry to hear of your situation and perhaps you should try the other neurologist Dr Fuller? from what i can gather from members of this forum GPs around the country have different opinions and perhaps you should try another practice as I had to do.
I know oxycodone/naloxone is not as good but i did get relief at 30mg/day but the side effects were simply intolerable for me..perhaps not for you?
Ah so you changed Gp? I think I saw Dr Fuller many moons ago . I have contacted my Gp and have a telephone appt in 2 weeks time to discuss if they will prescribe it if Dr Martin thinks its a good idea. Also we have a private Gp practice here and they will prescribe it depending on what Dr Martin says and if he thinks its appropriate so really not committing himself ! It will cost me but I dont care anymore ! Im just weaning off Clonazepam so feeling very nauseus and generally yuk . Tried sitting on sofa last night to sleep and it went quite well . Take care
Dr Fuller is also a neurologist at Winfield and I know Dr Martin consults with him sometimes.
If you have provided Dr Martin with all the US research then he will hopefully recommend a trial at least. Why don't you contact his private Secretary (Debbie Tallon) at Winfield and explain you want to make sure before you see him that he has read all the latest data you sent, otherwise appointment will be a waste of time.
Yes I resorted to sleeping on the sofa a couple of times and i think it helps as you are not in a prone position. If you are just coming of Clonazepam did that cause augmentation? What are you taking to help with that...... oxycodone?
One of the problems with buprenorphine is the side effect which affects me and most users as far as I understand ie severe nausea but that isn't as bad as RLS. I used to exercise and swim a lot which helped ease my RSL sometimes.
Good luck. You are in my thoughts and have my support
Yes Ive got Oxycodone. Really bad headache tonight but its probably withdrawal . Never felt Clonazepam ever helped so its one more drug I havent got to take. No it never caused augmentation .Ive got terrible insomnia but apparently thats the opioids . Cor its never ending .All I want is sleep ! There are some brilliant anti sickness drugs available , do you still suffer ? Thanks for chatting
Good morning ..how did the night go? i noticed your post (received twice) was after midnight
No problem to chat as that is the purpose of this forum. I live alone so to chat on this forum has helped me tremendously with my RLS "survival campaign"
I haven't found opioids to cause me insomnia except through the side effect of. nausea. I have been trying Zofran for the nausea but no joy so now on to prochlorperazine.
You are withdrawing from Clonazepam but what are you going to replace it with? Were you previously taking another DA for your RLS?
How much oxycodone did you take and did it help at all? Do you exercise or swim to try help with RLS and insomnia?
Sorry I just noticed you were on Ropinirole and as I did you presumably augmented on it and have got of it. I think i also read you tried oxycodone and it failed to help.
On one of your conversations you talked about cannabis oil and i agree with you that it must be a last resort for nausea. My concern is that Joolsg said it is only suppose to help when your body is getting used to bupre. Well i am well past that point and still have nausea so reluctant to start with cannabis!
Hi Davchar , I finally got to sleep at 7.30 am for an hour after my 2nd hot bath so today has been tough . I think it was one of my worst nights ever .I got up to 4mgs of Clonazepam but I dont think it helped but who knows ? So now Im on Gabapentin 1800mgs and Targinact 10 or 15 mgs a day but not helping the nights . Even this evening they have been pretty twitchy watching tv. Supposed to be going to our sons in Dorset tomorrow but going to see what tonight is like . I would rather be at home in distress than away .How much do you rate Buprenorphine apart from the nausea ? I dont swim but we like to walk ( weather permitting !) Oh how I hate Rls , its wrecking my life. How long have you had yours ? Take care . Heres to a good nights sleep !
Sorry to hear you had another bad night of RLS. I don't know anything about Clonazepam but I suspect it is making your RLS worse? Is it a sleeping pill?
For me buprenorphine (nausea apart) has been great as i can get to sleep and until the nausea intervenes, which is usually when i go to the bathroom in the early hours say 4 or 5am, results in reasonable sleep and no RLS.
My RLS has been around a long while (perhaps 8/9 years but until I was prescribed DAs it was mild and fairly easy to handle. UK GPS and NICE should be put in the dock for their failure to listen to US advice on DAS
I know what you mean about not wanting to do anything (ie go to Dorset) but you have to try continue and i hope by the time you receive this post you will have had a good trip and that your family gave you some tlc?
Yes I did but its now 1am and Ive come to the lounge with a duvet , my phone and a book ! D in law has left me her massage gun . Hope you have a better night? Are you on patches or tablets and how long have you been on them now ? If nausea wakes you up you arent gaining much I guess ?
Glad you made it to see see your family but sad to see the "lounge/duvet" routine!
After two bad nights (caused by nausea) I had a dent night last night. Yes i have swopped not being able to get to sleep (ie RLS) to being woken intermittently (nausea). Until recently i would have said i wouldn't want to go back to RLS but i am not so sure so perhaps buprenorphine is not the answer for all!
i have tried both patches and tablets and both of course block RLS but the patches are difficult to "control" as they do not last the claimed week, they put a steady amount of drug into your system ie at times when you don't actually need it and the steady nature of absorption can be upset by showers and temperature changes. I. The tablets have a half life of about 6 hours, an effective time of 24-30hours and I am now taking 2x200mcg tablets (ie 0.4mg per day)
Did you eventually get some sleep or was it the normal issue of waiting for the RLS to about about 4/5am? When is your NHS appointment with Roswell Martin?
I had about 1.5 hrs sleep and tonight is worse. Maybe its my fault for having 1 g and t but i did walk home . My legs are pure evil and i want to go home. I sem on the 19th not a day too soon
Sorry to read that but I doubt one G & T would make that much difference. However i have to admit that I had some friends around to play cards last night. They drank wine & beer whilst i had zero- zero beer!
Please remind me what you meds you are on for RLS 9past & present)?
I bet the 19th seems a long way off when you are pounding around in the early hours!
When you see Dr Martin I assume you will really "have a go" if he refuses to accept what the Americans are doing (and I do not mean just on iron) and that many experienced GPs in UK are following (unfortunately not yours)!
For me I was again woken at 6am with severe nausea (ie buprenorphine side effect) and after Jools told me to stop prochlorperazine (causes RLS) I am back on Zofran but i suspect i will need to experiment further.
Keep chatting if it helps? I understand exactly what you go through each night. Like many others I have been there
Since coming off various Da's for last 26yrs Im now on Targinact and gabapentin. Also back on Clonazepam as things so bad.Pregabalin made me feel low. I tried cannabis patches but waste of time when w/ drawing.Take iron and b12 daily . Tried magnesium spray and cream . Tried sleeping tabs ,made legs worse.Mood is very low today and cried a lot in private. Suicidal thoughts today , shouldnt have gone away this weekend . Im irritable and angry with the nhs system .just hate life and night time right now . Sorry to hear you are still suffering. Do you live in Gloucestershire or futher? Hope nausea improves . Thank you for listening . Ive hit rockbottom today . Sick of stupid suggestions from family ! P
Sorry but your post only came through this morning otherwise i would have replied earlier.
I understand about family reactions as my family & friends whilst basically sympathetic do not ,like many GPs, really know how bad RLS really is.
It sounds to me that when you mention 26 years you have really been through it. I have also wasted a lot of time of things such as magnesium, iron bisglycinate etc
What level of Targinact do you take? I got up to 30mg per day without much relief from RLS and had vert bad side effects.
Yes to both your questions on Gloucestershire (Cirencester) and nausea (still bad each morning but RLS under control). Where are you based?
It is no problem to listen, chat and I promise you I do understand your thoughts and that there is a way forward even though I suspect at the end of the day it is a balancing act with all the meds
Keep chatting and whilst i know it is difficult please try to be positive
Hi, thank you for your lovely message. I had a better night last night . Ive dropped my Targinact down to 2x5mgs which is suiting me better I think . Apparently opiates can cause insomnia so my last one is about 16.00 hrs . Ah Cirencester we are working there tomorrow ,have a strange job taking names at funerals (family request it ) so tomorrow Gloucester then straight to Ciren working for Tim Slade . We love Ciren ! We live in Cheltenham . Something is making me nauseaus so its a bowl of cereal again tonight plus a hot stone massage ...bliss !I guess if I do get Buprenorphine I will have a close relationship with a loo or bucket ! My appt is a week Friday and Im so scared hes going to cancel again . Hope you have had a good day and a good night . Lots of kind wishes A
You are of course correct about opiates and insomnia and of course buprenorphine is the same but the relief of zero RLS outguns that.
The nausea I experience with buprenorphine and opiates generally (I had the same with Targinact) does not make me vomit but simply a very overpowering sickly sensation. Difficult to explain but certainly not pleasant! Could your nausea be from the 1600hr dose of Targinact?
Good night's sleep last night but woken with nausea at 6-30am and have decided to stop the ant nausea tablets, as not effective at all, until I see GP again next week .
Yes I am lucky to live in a lovely area but it would be nice to see the sun a bit more!
I am not sure where i am now. I took as i said an additional one 200mcg buprenorphine tablet to top up my 2day running 5mcg/hr patch and it is now only 1-15am and I am unable to sleep with severe what appears to be RLS mainly in my arms (less so in legs). Any ideas would be appreciated
i am so disappointed as i thought i had a decent plan for next few days/weeks. Have i taken too much buprenorphine or not enough? I simply cannot get my head around this one?
I don't understand either Davchar. If you have been on the 5mcg patch for at least 2 weeks and the 200mcg pill each night and you are only on Day 2 of the patch, then it should work the same as last week.My personal view would be to stick to pills, at the dose that covers your RLS, and stick to it for at least 3 weeks.
But, I suggest you keep a diary and discuss with your GP.
I suspect something has triggered the latest episode, or the patch may not have been working properly.
Thank you for your reply. i cannot think of anything to trigger last night's breakthrough except I restarted iron bisglycinate after stopping in case the iron was causing the nausea.
My opinion is that all the changes have messed up my body clock etc. lets see what happens tonight.
Twitcher707 thinks that my statin (Atorvastatin 20mg) caused it but i take that every night so i think unlikely.
If i understand the trigger mechanism correctly 9layman's view) it means that whatever the trigger is it knocks the opioid off the D receptors and causes a dopamine imbalance. Is that generally correct?
I don't think it causes a dopamine imbalance, but certain meds can knock Buprenorphine OFF the opioid receptors and cause worsening RLS.
Although the statin hasn't previously worsened your RLS, the RLS may be breaking through because you are on a lower Buprenorphine dose than previously.
But I do think you need to choose which meds you are going to stick with AND stay on them for at least a month so your body can adjust.
I think the swapping from pills to patch and the change of dose has unsettled your RLS.
I think you should expect a few days/weeks of bad RLS until your body gets used to the new dose/method.
Thank you and as you predicted i am experiencing a bad 24-36 hours of RLS and I need to rethink my plan to a stable med regime.
I think that in trying to get the nausea under control i have lost sight of the key objective ie to block RLS. i suspect in the early days of my use of Buprenorphine i needed between 10 & 20 mcg/hr patches to block (ie 0.24 to 0.48mg/day) I remember exchanging information on the forum as to how long a patch lasted and that the patch didn't start to "work" for up to 24hrs after fitting? Then changing to tablets to try get a better idea feel for how much Buprenorphine I needed. Then reducing amount to try alleviate nausea.
Basically I do not believe I have ever reached a point of knowing what my stable meds are! After a bad night last night i have just had a 5mcg/hr weekly patch on all day (2 days into it's "wear". When RLS started abut 8pm i took half a 200mcg tablet. no effect by the time I went to bed at 10-15pm so i took the other half and I am currently free from RLS (and will attempt to sleep next) after taking a final half at 12 midnight
If we assume that a 2 day old 5mcg patch is fully effective and therefore my blood will have at least 0.12mg of bupre built up plus 1.5 x200mcg (ie 0.3mg)tablets that should give me a possible 0.42mg currently present and perhaps not quite enough if original requirement was 0.48mg/day?
So I going to have to restart my plan B to stabilise my meds and would appreciate any comments on above please. Kind regards
My view hasn't changed Davchar. I think you should switch to pills and take 0.4mg.
It will take at least a week to settle.
I just don't think the swapping between the patch and pills has been helpful and I personally don't think it's a good plan to switch between them now.
You need a stable, constant, regular amount in your body.
My view would be to stop the patches, switch to 0.4mg or 0.6mg pills and take them for at least 3 to 4 weeks anc then concentrate on getting your nausea under control.
Hi Jools , i gather from another member there is some negative news re Buprenorphine. I cant find your post . This is so depressing as I was hoping Neurologist would let me trial it on Friday. Its just so unfair .He has used methadone before so maybe I should try that if he agrees ?
Dear Jools g,i hope you are well and have got over the disappointment about the step backwards taken on research trials. Your efforts will hopefully be rewarded soon.
I would appreciate your opinion on where i am up to now on my "plan".
I have steady my buprenorphine dose at 2x200mcg per day (100 at 7pm and 300mcg at 11pm) and RLS is under control but the nausea has persisted and quite badly. i am woken every morning at 4/5am and cannot eat until late morning and sometimes later.
My Gp has tried several anti nausea drugs without any success and i will try the cannabis route soon but i wondered if you had come across any similar cases to mine.
i have to admit that the nausea is so bad, was yours, that i even contemplated going back to lesser drugs and tolerating some RLS eg oxycodone
I'm sorry to hear this, but I did give it some thought while I was away.I've not heard of the nausea continuing so long for anyone else, especially when zofran has been tried.
So, I think it is the opioid induced constipation causing your nausea.
I suggest you buy magnesium citrate and take 3 every night before bed.
Also ensure you drink at least 2 pints water during the day. Add cauliflower and broccoli to evening meals and flaxseed to morning cereal. Lactulose from the GP may help, but much better to use food.
I hope dietary changes help the constipation and therefore the nausea.
I hope the seaside refreshed you but i suspect a bit cold& wet.
I will of course note your suggestions about the constipation side of things. I am already on senna and lactulose which helps but not had much effect on nausea.
Yes, it was wet and cold but it was nice to breathe fresh, sea air.I do hope you can solve the nausea. To have relief from RLS is so fantastic, but to have continuing nausea is frustrating.
I had another GP appointment this morning after another drug, metoclopramide failed to even reduce my daily nausea (5am to 11am). Has prescribed a slow relapse patch (not sure of name as not yet gor from pharmacy) used for travel sickness prevention.
My neurologist has also suggested trying domperidone but the GP reluctant because of a side effect involving heart rhythm.
I have signed up and passed all preamble with Curaleaf (do you know them?) but have not had an initial consultation yet. Does the consultation involve them recommending what to take? i think you took oil but at what dosage please? There are dozens of products on the site list. Both flower & oil. do you still take it?
I was prescribed Champlain Althea cannabis oil with 20% THC. But at your zoom consultation, they'll talk through what they think is best for nausea. And yes, they will recommend what they feel will work best.I took between 0.2 and 0.3ml at night, an hour before bed and then 0.1ml during the day, if needed.
Thanks your information. Was the result quite positive quite quickly or take some days/weeks?
I am currently on 400mcg per day and as discussed with you some time ago i have not changed anything, except slightly the dose timing, for some weeks and i suspect now that the nausea has got worse and GP is suggesting going back to patch as less peaks in buprenorphine in body. before that i am going to test the prescribed "kwells" type patch and cannabis oil What do you think please?
Just a cautionary note on cannabis. I used it a lot for sleep and for occasional RLS relief. But I have recently discovered that it was making my constipation much worse. It is not a common side effect of cannabis, and it may be due to the THC in mine vs. CBD. But for me, the combination of buprenorphine and THC guarantees problems.
And I know that constipation triggers other stomach issues, as others have pointed out. For me, it’s GERD. For you it sounds like the nausea. So maybe focus on the dietary advice above and see if that helps.
Sorry to be "stupid but what are THC, CBD and GERD?
I understand what you mean by nausea and diet but i try to keep a sensible diet to help with constipation eg lot s of fibre, prunes etc.
My GP prescribed another anti nausea drub , a travel sickness type medication which hopefully (I doubt) will put a steady stream of anti nausea chemical into my system.
Personally i think i need to go back to buprenorphine patches. i must admit that the nausea is now becoming more debilitating than RLS itself and that is saying something?
No problem - it’s becoming a world full of acronyms. 🤔 THC is the component in most cannabis that induces the “high” effect. CBD is basically the component that provides much of the medicinal elements. Recreational cannabis is THC dominant. Some strains filter the THC out and leave you with mainly the CBD. My sleep and RLS relief came from the THC dominant strains; CBD by itself never did much for me. Many get relief and various benefits from CBD alone, but not me. Not sure is nausea relief is driven by the CBD or the THC. Joolsg is likely more informed on this. Sounds like you are looking into the stuff she recommended, so give it a try.
GERD is gastrointestinal reflux disease - the heartburn type of stomach issues, similar to what ulcers feel like.
Do you feel like your constipation is under control with your diet, Senna, etc? If not, and if it’s still pretty severe, then it’s possible that is the main driver of your nausea. Again, I’m not sure, and I imagine your doctor is factoring that into your treatment. But I know my GERD symptoms only act up when my constipation is bad.
My Tramadol experiment was a failure. I gather that when it works for people, the relief is fairly immediate. I gave it several days, with increasing dosage, and the RLS relief was disappointing. It also triggered worse GERD symptoms for me. But it works well for many people, so it might be something for you to consider.
My constipation seems to be under control with lots of senna and lactulose. I do not suffer fro GERD fortunately.
I still have a couple of options to try before i go down cannabis route. One is to really to test times of buprenorphine dose.I think my nausea is always following the 5/6 hour peak effectivity of the 300mcg I take at 11pm/midnight. this also brings in the insomnia factor of the opiate.
So my first experiment is to try
100mcg (half a tablet) at 6/7pm to stop the evening RLS symptoms
100mcg at midnight (will peak at 6am but hopefully nt too much as to cause nausea.
100mcg when i wake (hopefully 7am) to see me through the day.
I suspect another 100mcg will be needed 9total 400mcg) but not sure when to take yet.
Davchar, if you and your gp have exhausted all anti-nausea and maybe all anti-constipation options, maybe suggest a trial of methadone? It is also a long acting opioid and (in the US mainly) there is ample experience with its use for RLS. If your gp is willing, start at the lowest dose (5 mg I think, but do keep in mind that you can start at and add half tablets), although it would be good to have room to play with the dose, thus be given a somewhat larger supply.
I am really sorry the nausea doesn’t resolve; it must be debilitating.
That is a disappointment re the methadone. Maybe discuss whether she will try any other longer lasting opioid - if only as a trial for -say- a month to see whether it really is the buprenorphine.
Nothing specific, as I don’t have that knowledge. Dr Buchfuhrer is well acquainted with the variety of opioids available. It may be worth looking at his website: rlshelp.org. Additionally, there is a paper about the use of opioids for RLS published in 2018: mayoclinicproceedings.org/a...
Or talk to your pharmacist to get a good suggestion. Emphasise the low dose and the need for a long acting type.
Yes ciren was freeeezing today so didnt have a wander . Will be back next week for The Barn theatre. Yes It could be the Targinact , it usually comes on mid afternoon tho and my last Targinact is 20.00 hrs .Its all such a juggle , dreadful night last out , score out of 10 my legs were a 10 so very little sleep .It just takes over your life . How long have you had it for and who diagnosed you ? Take care
I have had mild RLS for some years but never really bothered about it as didn't affect my sleep but then (in 2016) I had a heart by pass operation and afterwards my RLS gradually got more and more of a problem such that I started to take strong co codamol as advised by my previous GP before I moved house. This GP practice was my undoing because they all prescribed various DAs and I finished up on 4mg patches of rotigotine and augmentation (last year). In between i had tried pregabalin. gabapentin etc etc By that time i had moved to a different GP and whilst they didn't know much about RLS they were at least willing to learn.
Your 10 out of 10 is really tough. I have been there when at 3am in the night you are walking around trying to kick out the pain but know that it will come back when you get back into bed. In a way I am lucky as I live alone (my wife is in a care home with dementia) so i don't disturb anyone but it is still a lonely life.
i don't think I am being very helpful but couldn't you tolerate a bit more Targinact.
I got to 30mg (ie 6 x 5mg tablets spread throughout the day before I got unbearable side effects Your two tablets are I assume 2x5mg and surely that is not enough to block RLS even though you get nausea? If you delay the afternoon dose do you get RLS (or augmentation?)
The dr put me on Targinact 4 times a day 5mgs but that was really for when I was withdrawing and I was like a zombie and unable to drive . Last year I fell asleep driving twice and that really frightened me. When my insomnia kicks in this forum says it will be the opiates so I take my last one at 6pm . Ive just taken 10mgs of Targinact now at 11pm lets see what that does ! I will update you tomorrow ! We have been married nearly 49yrs but 4 months ago I suggested my hubby went into the spare room . As sad as that has been it has lifted so much pressure from me and he can get a good nights sleep. I dont get ANY pain with my legs just leaping and jumping and crawling inside and walking is the only answer . Sometimes I could scream at my surgery pharmacist when she insists on talking about my pain ! Im so sorry to hear about your poor wife , it must be so hard for you and lonely. Do you have any family around ? Will let you know how tonight goes and hope yours is better. Kindest wishes A
Thanks for post and sorry to hear your gabapentin reduction has given a problem of drowsiness and nausea. I am on a small dose of pregabalin (50mg/day) and that doesn't give me too many problems only balance and weight gain. Have you tried pregabalin?
My nausea (certainly from buprenorphine) is still my main concern and GP feels it is the result of my gut getting excess pressure, especially when lying down, from the constipation caused by opiates. He has decided to change my laxative regime significantly and then alter my anti nausea meds if that does not work.
I am not sure if he is right but I have to give him credit for his patience with me
We all seem to react differently to many drugs and in fact pregabalin was mentioned by Joolsg( I think) as used to stop depression and anxiety and i think she said at 25-30mg/day as required.
I am fed up of this nausea BUT it is better than having RLS break through
Good luck with appointment and make sure he knows that their is a positive report on buprenorphine and RLS coming out very soon in USA.
That is great news i am pleased that you are a step towards a good night's sleep. i will be interested to know what he prescribed for nausea and what dose of buprenorphine you are starting on (patches or tablets?)
Unfortunately my nausea persists and GP is struggling with what to offer next.
Im on 0.4 mgs of a sublingual tablet ( so put it under your tongue to dissolve) Today was the first day Ive had no nausea at all so it must have been the Targinact doing it.He prescribed me Domperidone which is his favourite anti nausea, 10mgs , 3 times a day if needed. My legs were bad from 23.30 until 2am but I took tablet late as I had to drive after babysitting and then I slept solidly til 8.45 so AMAZING ! Take care
Hi sorry for delay . Im not taking the domperidone as I have no nausea. Think constipation may be a problem though . On to the prunes ! Sleeping is really good , tend to wake quite a lot but legs are fine so tend to read or listen to music til I drift off again . He prescribed Domperidone 1 x 3 times a day when needed. Not sure my Gp practice is going to prescribe Buprrnorphine , they will let me know once they have received Dr Martins letter apparently .Take care . Hows it all going with you ?
Thanks your reply and pleased to see that your RLS are under control without nausea.
My surgery were the same on issue of buprenorphine but ok when they got Dr Martin's letter.
Unfortunately my nausea is persisting despite trialing various solutions. I mentioned Domperidone to my GP and he was reluctant because of a slight side issue on heart affects. Anyway he has prescribed a low dose trail which i still have to get. Unfortunately the nausea seems to be getting worse so i am becoming quite depressed about it.
i saw my GP this morning and mentioned domperidone.
Are you using it "as required" or all the time? GP was reluctant to prescribe it as he says it is not normally a drug you use for long periods say only 1-2 weeks?
The only thing i did differently tonight was i went back onto iron bisglycinate for fist time since nausea got bad but with GP approval. Surely that couldn't have caused this new development. Hope you might have some ideas as it looks like a long night ahead.
That is great news especially when you consider the post from Joolsg this morning about trials on buprenorphine. I assume you saw it? Basically the medical research bodies in Uk are not prepared to trial buprenorphine and so it is going to be more difficult to get it prescribed. So you might have to stick with Targinact.
I assume the tablets you took were 5mg each?
I am still have very severe nausea with buprenorphine but I did also (less so) with Targinact. It has got so bad that i am considering reverting to Targinact
It could be that Dr Martin isn't aware of the latest Uk hospitals reluctance to research RLS generally and that all you have provided on buprenorphine will be persuasive.
If he does agree to refer buprenorphine back to your GP just as k him if he knows about the nausea side effects etc! You should be ok if don't get any nausea nausea with Targinact? my problem is i get nausea with all opioids and it is not nice. I am going to have to decide which is worst constant 18hours a day nausea or RLS 10pm -4am!
Hi davchar23. I do not know if I can help much regarding the nausea as this did not bother me after the first few days. I am the same age as you and I used Butec patches 15 mcg strength for two years but they certainly did not work for 7 days and my GP would not let me change them more frequently. I then managed to get started on sublingual buprenorphine and I take a total of 800 mcg in the day (one at lunchtime, one at 6.00 pm and two at 10.30 pm) and this keeps me free from RLS nearly all the time. It is very difficult to know how much sublingual bup to take after the patches. The difference is that the patch delivers the drug continuously whilst the tablets only last a shorter time. Some people on the site here can take one dose of sublingual buprenorphine before bed. This did not work for me as the following day I got withdrawal symptoms so Prof. Walker suggested dividing the doses and this works reasonably well. I could do with one more tablet per day but my GP has said "NO".
This may not be of much help to you as obviously the nausea is horrible for you but I know I am always glad to hear how others are managing and how much and when they take their doses. Best Wishes for getting this sorted out
Thank you for your reply and yes the nausea is mt main concern at moment but good to exchange thoughts on burpenorphine use. I believe I am lucky on two counts
a) my GP is prepared to "research" in an area where "some fear to tread" on RLS (sorry for the pun)
b) I seem to need a relatively small amount of the drug (probably less than 10mcg/hr patch) to block RLS
So today my Gp has told me they wont issue prescription for Buprenorphine so who knows what I will do now .Im so angry ! After 26 yrs I find something that works but the postcode lottery kicks in .Just hoping Dr Martin will prescribe again .Hope you are well ?
I am so sad for you and at the same time angry that GPs are still taking a poor lead on RLS.
Is it very expensive to buy it privately through Dr Martin?
I am clear of RLS (due to Buprenorphine of course) but the nausea is still a big problem which my GP is struggling with but at least shows an open mind. I am on my 4th ant nausea drug and this morning received my first bottle of CBD cannabis oil (the medical non hype type). the only problem was it was nearly empty as cap came off in post. Have a laugh and think about the "happy postmen"
I can only hope you follow the recent post by a fellow RLS forum contributor who was in a similar situation to you and changed GPs Good luck and keep me posted
I will , thank you . Did you change gp to get your patches ? I have seen Dr Martin on the nhs so he should be able to prescribe it again , its just going to be a hassle unless he can send it electronically to chemist .
No i am still on tablets and trying different anti nausea medications prescribed by my GP.. If i cannot find an answer and some CBD medical cannabis doesn't work the ni will change back to patches. They are not as convenient to control as tablets but the nausea seems to be less.
Spoke to Dr Martins secretary yest and she said my Gp cannot refuse to prescribe them . She then said if they refuse they have to give Dr Martin a good reason why ! Dr M wrote again yest telling them to prescribe. Im quite stressed and got upset as I only have 6 tablets left
Yes my tablets are 200mcg size and my dose is the same as yours ie 04mg per day which i split in various ways (tablet cutter) to try in vain to combat the nausea.
I have already put half a dozen in an envelope which i will post 1st class on Tuesday if you don't have an alternative answer by then. Sorry but that is about all i can send you without GP thinking I am overdosing.
I assume you have not had any nausea which occurs when buprenorphine effectivity reaches a maximum level ie 6-8 hours after beig taken.
Thank you , I hope to hear something tomorrow.I do have a bit of nausea usually about 2pm til mid evening but its bearable. I just struggle to eat but thats good for weight loss ! When I was coming off Da's and up all night my eating was appalling and apparently gabapentin which Im weaning off puts on the pounds .Will be in touch asap
Yes i was the same on pregabalin. i understand that both are significant weight watchers nightmare.
i am sorry but not surprised you have had some nausea with the buprenorphine and hope it settles for you soon Not much to pay for though for a good RLS free night?
Oh its just amazing to be free, in fact I still cant actually believe that its working. Re Gp my husband thinks I should offer to sign a disclaimer if they are not happy to give it. I have done a lot of reading and apparently its their choice. I have also looked at moving to a new practice . Oh the stress this has caused . Its so lovely to chat to a fellow sufferer, someone who knows what a horrible illness it is. Take care
That is so kind of you. Im on 1 x 0.4mg sublingual at night. I will run out after Thursday. I presume yours is a bigger dose ?? I would happily drive over and pick them up if I dont win my battle! I will keep you updated , should hear something Monday. Thank you again for being so thoughtful.
I have will post this evening half a dozen 200mcg tablets (sorry all i can spare) first class to you. I suggest you try on a lower dose if you think you are not going to get a supply soon. I found that the build up in my system means I can mange on a lower dose but taken very last thing at night.
I assume youare trying to get hold of Dr martin's NHS secretary? he does have a private secretary, DEBBIE TALLON, who works at the Winfield in Gloucester. Direct no 01453- 337270
Hi , may have found a Gp to prescibe , fingers crossed. Dr M has done me a prescrip but when I drove to collect it nothing there ! Will keep you posted. Cant get my chat to do anything . Have a good weekend lifesaver !
Would you be happy to tell me which gp practice you are at? Ive just been refused at my new surgery. You can reply on chat but i cant seem to msg you . My email is spelt wrong but cant change it . I wont mention you at all other than a gp prescribes it at your practice !
My email address is spelt wrongly but it wont let me change it so I dont seem able to reply to your chat on here. Think we will have to stay on here for the time being .
Never thought this website would be a source of drug trafficking! 🤣 Seriously... glad you are working out a solution. However, you both may want to familiarize yourselves with the chat function so you can trade personal information without having it be accessible to the whole community (not that we aren't a trustworthy gang...). In the upper right corner you will see a "chat" button with a paper airplane picture. Click on that, then click on "New" and then start typing in the name of who you want to sen the message to.
I think it would be wise to remove your address from this reply. Such personal thing you’d better exchange by personal or direct message or chat function - whatever it is called. I just notice 707twitcher advised the same.
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Buprenorphine and nausea
buprenorphine patch - any advice? 
