I started taking Buprenorphine about 3 weeks ago - 0.04mg and it is controlling my RLS, which is a massive relief. However, I'm hardly getting any sleep through the night and have read on the Patient Information Sheet that, ironically, sleeplessness is one of the main side effects. I'm trying all the usual sleep hygiene methods in the evening, such as no screen time, reading before bed, listening to sleep stories/hypnosis via ear buds etc. Most mornings I'm managing to catch up on some sleep, but a couple of days ago I slept until 2.30pm! I do have a few other side effects of, nausea and sleepiness during the day (not surprising).Has anyone found that after time the sleeplessness during the night improves? Or, is this how it's going to be - no jumpy legs, but still unable to sleep? 🤔
Thank you for reading and I will be very grateful to hear of other people's experiences on Buprenorphine. Many thanks.
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Rls29
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Send a message to claire_c. She has opioid wakefulness. Hers did seem to settle. She thought it might be the decades of RLS causing sleep disruption. Hers has improved.Buprenorphine does cause 'alerting'. In my case it manifested as panic attacks. Dr Buchfuhrer had Already advised me by email to add pregabalin. Pregabalin is a sedative.
So you could ask your doctor for a small dose of pregabalin (50 to 75mg) to see if iy helps.
I think SueJohnson uses zoplicone but I'm sure she'll advise you soon.
Thank you Joolsg, but I have been on Pregabalin and went through hell coming off it. It really messed with my head. I was told the withdrawal symptoms are similar to coming off heroin!!! Never again. The things we have to go through to find a medication that works. Fortunately they work OK for some sufferers.
Why did you stop Pregabalin? Did it not cover the RLS? It's now first line medication after getting off Pramipexole or Ropinirole.But if you stop, slow reduction is still needed.
Getting off dopamine agonists is worse than getting off heroin. But as long as you reduce Pregabalin slowly, over several months, you don't usually get withdrawal symptoms.
Unfortunately that's not the experience of many of the thousands of members on pregabalin/ gabapentin forums that I'm on. Slow withdrawal is the way to go but many people get terrible withdrawal symptoms from gabapentinoids, even when they follow the recommended withdrawal schedule.
Hi Rls29 - Joolsg is right, I've experienced the same side effects as you on an identical dose. I started Buprenorphine in June last year and I'd say, if anything, I seem to have more daytime sleepiness now than I did in the earlier months, although I wonder if part of that is seasonal - our bodies naturally want to hibernate in winter.
But the nighttime wakefulness is hard and I really feel for you. Even though we all agree that it's blissful to be able to lie still in bed rather than pacing the house, it's still miserable not to be able to drop off when you're so desperate for sleep. But yes, I've definitely found the insomnia improving as time goes on and my body learns to sleep again. I wonder how much of the wakefulness is caused by the Buprenorphine and how much, as Jools says, by our bodies' sleep mechanism being damaged by years of disruption.
I'm concentrating on quieting my mind as much as possible, especially just before bed, when I've found that meditating for 20-30 minutes (I do a guided session from YouTube) really does help. Again, being able to keep still for that is a game changer.
So I think give it time and experiment with some relaxation techniques would be my best suggestions. It really is very early days for you still. 😴
I'm going on two decades of my opiod causing insomnia. Tried everything under the sun (moon). It's the trade off im willing to take. I'm not happy about it. I take Oxycodone extended release. Good luck. Everyone is different. You may settle into a sleep schedule that works for you
Hi , Im rls free now (9 months) and on 0.4 Buprenorphine sl tablet but my sleep is dreadful . Ive just tried Pregabalin 25-50mgs but it isnt really helping . Im so relieved to be Rls free tbh I just read a lot and listen to music . I can sleep usually from 2/3 am which is a bit late but hey ho we cant have it all ! Good luck
Good evening ..long time since I exchanged thoughts on Buprenorphine with you but noticed your comment on RLS29 post and thought I would add some information from my experience.
I need about 0.45mg/24hours to block my RLS. Initially I took this amount in the form of sublingual tablets and experienced severe nausea, hot/cold flushes and some insomnia side effects.
It took me quite a period to eliminate these side effects and i only did so by using a mixture of tablet and patch. Please do not under estimate the amount of patience and time needed to find the optimum solution which for me was a low dose patch (10mcg/hr ie 0.24mcg/day) which gives a base of protection but doe not put too much drug into ones system at any time during a 24 hour period and this means that the insomnia level is not surpassed. I make sure of my RLS block by splitting a 200mcg (ie 0.2mg) tablet into 50mcg or 100mcg (needs a good tablet cutter) and tasking 50mcg or 100mcg dose as necessary. I suspect this will vary depending on the person.
By following this regime I do not exceed the insomnia level. The nausea and hot/cold sweats are in fact not a side effect of too much buprenorphine but are in fact withdrawal symptoms and by levelling out the needed dose I have eliminated these.
I believe that even taking 1 whole 200mcg tablet (and certainly two at a time) means that a person is going to exceed the insomnia level of the drug.
I tried several medications as advised both from my GP and comments made on this forum in a vain effort to stop nausea and hot/cold sweats before I realised that these problems were withdrawal issues and even a quarter of a sublingual; (ie 50mcg) blocked them.
I hope this information might help a little on you continuing to block RLS but also sleeping better.
Hi and Happy New Year ! Wow you have certainly done your homework , would you say you are pretty much sorted ? I cant really decide if the Pregabalin is helping . Still have the sweats , mood can be up and down, bit of nausea but not every day . Appetite could be better . Ive only had a month of Pregab and the main issue is still insomnia. I can sleep for England once Im asleep but its usually 1- 3am . I often just dont feel sleepy . Had some Zopidem sleeping tabs which were amazing but Drs just reluctant to give more. I think I have decided tonight to maybe slowly wean off the Pregab , I dont really want another drug if its not helping that much , even tho its only 25 mgs a day . I will let you know how it goes . Take care. Thanks for message
Good morning Huntinleroy and good to hear from you.
I don't think as a RLS sufferer you can ever be totally "sorted" but yes I have got a lot more control over my symptoms than previously. It has taken a lot of "research" and patience to get to a position where I know:-
-the amount of buprenorphine I need.
-that the nausea and sweats are a result of the level of buprenorphine in my blood dropping below a level which effectively points to "withdrawal"!
-I still have moods and I have not found a way to eliminate those
-My appetite is certainly reduced but not enough to lose much weight but better for me i think.
- I go to sleep within a few minutes but If I wake during the night I have to be very careful about the top up dose I take (usually 50mcg ie a quarter of a tablet) as too much then causes insomnia and at 4am that is not nice!
Of course you must decide your own "formula" for dealing with the buprenorphine side effects but I doubt that pregabalin is an answer and so I would stop it completely. I experimented with it at various doses and did not find any use to me
Are you still dependent on Dr Roswell Martin's or have you now got a GP "in hand"?
Hi , no I found a new Gp so am under him now , not that I have seen him of course ! It turns out I worked at his practice about 20 yrs ago for his wife who wasnt his wife then ! All very complicated !! She was the practice Health Visitor who I assisted . She apparently recognised my name and suggested he took an interest in my case which luckily he did . He is prepared to listen which is good . Hows your wife doing ?
Good morning and thanks for asking about my wife but unfortunately she died about 6 weeks ago after suffering dementia for nearly 10 years. The last two years were quite a struggle but in the end it was a blessing for both of us even though it leaves a hole in ones life.
I too have wakefulness with buprenorphine and control it with 600 mg gabapentin. I take 20 mcg/hr patches so not sure what that means in terms of dosage of sublingual. On a lower dose, I did not have needed the same dose of gabapentin but it didn't cover the RLS. I see you can't tolerate pregabalin but not sure if you'd respond the same to gabapentin. I hope you find a solution.
Hello. Just 0.1mg Buprenorphine stops my RL. Have been taking it for 6 months. Unmedicated I'd be awake with the wriggles until 3 or 4am and get about 3 or 4 hours sleep.Now taking Bup I get to sleep promptly but wake after 4 to 5 hours in the early hours then usually don't get back to sleep.
I'm not sure if it's the Bup causing this or my natural insomniac tendency coupled with a lifetime of broken sleep.
I am intending to discuss with GP trying something like diazepam to help get back (or stay) asleep and hope eventually my head learns to do this naturally.
I don't know if any of the above helps but you're not alone.
I did get some zolpidem from gp and they were amazing for sleep but they would only give me 7 tabs ! Jules did say tho that long term they will stop being efficient .
Hi there Huntingleroy. Thanks for the info. My GP has given me 28 Clonazepam 0.5mg tablets to try. This as suggested by consultant Dr Robin Fackrell. I'm hoping that they might get me sleeping through the night to the point I don't need them.
Hi Islay9, don't despair just yet. Just because it keeps some awake doesn't mean it will for you. And even though I had only shallow sleep for two years before adding the gabapentin to enable deeper sleep, it was still 100% better than life with RLS. Please take heart and try it before you despair. 🥰
Yes you've got it. No RLS but up & down during the night!After a year I have got used to this so I have adapted & do emails etc at night & have a 40 minute sleep about 3pm.
I have this problem and I have both Zopiclone and Diazepam to help me but they are not that effective anymore so I also use about half a capsule of Tramadol which increases serotonin a bit to get me to sleep. I take the Tramadol a few hours after Buprenorphine. I’m glad my GP lets me as I can’t find any other solution. Half a paracetamol also helps a bit but too much gives me nightmares.
I have been on .250 mg sublingual buprenorphine (Suboxone) since September 2024 (so about 4 months). Although it has controlled my refractory rls 100%, I too have had sleep issues with this medication. That said, I've been a notoriously poor sleeper for decades. I encountered intolerable side effects with the gabapentinoids (pregabalin and gabapentin) so I am staying clear of them now.
I will say that benzodiazepines work pretty well for sleep in my case anyway but they are for short term use as we develop a tolerance and require higher doses....not good.
So....in my case, and I'm aware that this isn't an option for a lot a folks, I have had good results with THC+CBN gummies. Here in Michigan, there's a pot store on every corner. If you ask the sales associate, they can recommend which products are best for sleep. I purchase the 10 mg THC product, cut them in half and take a half about an hour before bedtime. Do not take a whole one to start! Ask me how I know!
I must admit, I felt a little out of my element (or a lot) at 70 years young going into a pot store. But, I have been to a few different ones now and they all have been very good experiences.
That's my 2 cents worth. I hope you find something that works. Sleep or no sleep, I'm not going back to rls hell. I'd rather lay awake all night completely relaxed that have to shake all night!
My opinion on the key to sleep whilst taking buprenorphine for RLS prevention is a matter of finding the right formula for an individual in terms of dose versus timing and a mixture of patch and tablet. In a answer to Huntingleroy below I have given my personal scenario.
Tablets alone boost the level of the drug above the level causing insomnia
Unfortunately everyone needs to find the formula which suits them
Hello Rls29. Sorry to hear that your sleep is not good but glad your RLS is better. I’m using 10 microgram Buprenorphine 7 day patches and generally sleep well at night my only issue is that I fall asleep in the chair in the afternoon as feel very tired and think this is a result of the medication. I have no other symptoms.
I hope you find a way to deal with your sleeplessness
I hear this a lot with the buprenorphine. I take .5 mg a night, but I do not experience the wakefullness. I need to take it pretty early in the evening as my symptoms start soon after the sun goes down. That allows me to read a book, go to the cinema or out to dinner without having to excuse myself to go "walk it off". I do not get any RLS night while in bed. Perhaps there is a "window" where wakefullness will happen, but I'm still active so I don't notice it. The bup lasts through the night.
I do have a long history of sleep disruption beyond the RLS, but don't do well with gabapentinoids or sleep medications. I definitely do not do any screen time, TV and do something relaxing like reading, drawing, coloring,needlework or listening to soothing music for 2-3 hours before bed, keep the lights low in the house, take a hot bath with epsome salts right before bed , and listen to sleep hypnosis via YouTube and that does the trick. I routinely sleep 7 hours. I do still wake up, not because of RLS, but usually get back to sleep fairly fast.
I started the buprenorphine patch 10mg. I switched from Targin as it was not helping with my RLS. I also realised that buprenorphine is a safer drug as it is a partial agonist and does not suppress your immune system, does not effect your sex hormones, and causes far less constipation than Oxycodone medicine. With a .200 sublingual pill at night of Buprenorphine I don’t get RLS. For my long term insomnia I find vaping a small amount of medical cannabis works very well with the buprenorphine to make me sleepy and relaxed. No side effects.
I've been in Buprenorphine (Bupr) for 7 years. And I've been awake for 7 yrs. At first I thought I was up all night since that's the way it was for 33 yrs with RLS. I only learned recently through extensive research that insomnia is a common side effect of Bupr. Mine hasn't gotten any better over the years. What I do now is take Bupr in the morning hours. I'm not yet settle on the best time but no later than 1000. Even taking Bupr at 1000 or 0900 still keeps me awake at night. But I do fall asleep eventually. And I usually sleep until 1000 or as late as noon. But, I have breakthrough symptoms around 0400. If I wrap my legs with a heat blanket I can usually get back to sleep. Wake up again at 0900 - 1000, take the Bupr and go back to sleep, if I can, until the Bupr wakes me. Doc tried me on Ambien but that med took away what little sleep I was getting. Pregabalin only worked 3 mo's for me. Being RLS free is worth being a zombie and dragging butt through every day.
Hi - I suffer from PLMD, and I too experience wakefulness with buprenorhine. It didn't abate. I did not want to take benzos or any other sleep medication, but about 6 months ago I gave up and started to take a relatively new drug, expensive too, called daridorexant. They say you don't develop tolerance to this drug, and they say there is no withdrawal. Well, that was said before about other new drugs and it was false, and this might bite me in the back on day. But I was desperate. It helps me sleep, and it also allowed me to reduce the buprenorphine, which at the time of me starting this sleep medication was up to 0.1mg. Now I'm down to about half of that again. Possibly this daridorexant drug has a postive effect on PLMD all by its own.
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