Has anyone else got any experience being on buprenorphine 10mcg patches? I have been on them since December but since I have been on them I am getting awful terrors every time I close my eyes and doze or try and sleep, it’s very upsetting and scary. The patches seem to give me insomnia and I’m forcing myself to sleep and just end up in a nightmare to wake up really scared and boiling 🥵 I know it’s partly due to the pain I’m in but it has to be the patches as I didn’t have anything like this before.
Has anyone else experienced this? Do you have any advice on how to prevent them? Has anyone come off the patches and got experience with that as I tried but I didn’t have anything to replace them with and due to the pain I had to go back on them and I did only last 2 days. I speak to my pain specialist on Monday thankfully but any advice would be welcome because I am really struggling.
Did anyone else find it have them stomach problems with them as well?
Many thanks x
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MyStar86
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I'm sorry to hear this. Buprenorphine can cause alertness/insomnia/panic attacks.I have never experienced night terrors as you describe. Are you getting any sleep at all?
What has your doctor said?
I have found a few case reports on Buprenorphine and night terrors but can't access them, as they're pay for access.
There are similar reports on drug forums though, so it does happen.
Thank you so much I’m glad to hear that it does happen and it is the drugs causing it as I didn’t have it before and it’s horrible I’m barely sleeping at all I get about an hour initially but when I wake up I am wide awake then have to try and force myself to sleep and it’s just one terror after another I look at the clock hourly. It’s very upsetting as I am still I pain because I can’t rest to recover. I try to have rests in the day but I end up with the terrors I can’t rest without being trapped in a terror.
I have been waiting to speak to the pain specialist as he has been away since he put me on them. I was also put on pregabalin but it gave me terrible gut issues so I had to stop it but yes they definitely help take away the negative effects of these patches I could get much more rest when taking the pregabalin but it was too much with the toilet issues I was getting really unwell I did tell my gp and she just said to stop the pregabalin but couldn’t advise on the patches so I’ve had to wait for the pain specialist. I really want to come off them but I will need a replacement.
Thank you so much for coming back to me and for looking into it that means a lot as I have been so worried and scared not knowing what to do just getting exhausted from it all and I can feel myself getting anxious which isn’t normal for me I just don’t feel like myself anymore 😞.
I do hope you can see the pain specialist soon. Can you send an email explaining the night terrors. Maybe methadone would help the pain without the night terrors. It's a shame pregabalin caused gut issues. Gabapentin is in the same class of drugs ( anti epileptics).but is absorbed differently so it might not cause the gut issues.
Thank you!! I did email his secretary as soon as I started getting the terrors and told her all about it and how scared I was but she just said he was away till the 8th January then didn’t have an appointment till Monday next week so I have just been waiting for some help not knowing what to do and all the symptoms getting worse. I’m so tired but I’m so scared to doze at the same time because the terrors are so bad and feel so real it scared me just thinking about it. I did try to stop taking them but only last d a few days and had no replacement so I had to put the patch back on 😞. I tried gabapentin and I did cause the same issues my bowel is a big problem for me and I have an ileostomy so medication is absorbed differently for me and both of those meds just caused rapid output which was so painful and draining so I wouldn’t risk taking those again. Hopefully he can change the patch as I don’t find this very helpful for pain relief as it is which I did tell him but he said it builds up in the system and works with the pregabalin however not taking the pregabalin and the patches being more in my system I’m just getting the negative effects from them.
thank you for the advice I know I’m a complicated case but it means a lot to get some advice and help as I’ve felt so lost and alone going crazy with these stupid drugs x
Hi, I tried coming off the patch and I am in agony I cannot cope however I am worried about the terrors but the pain is way worse than the terrors. Do you know if I can cut a 10mcg patch in half? Will it still work? I need the relief but I thought trying half the patch might be a better way. Do you know if that would be ok? Thank you again xx
Are you in the UK or USA?If in the UK, you can ask to switch to Buprenorphine pills. The 10mcg patch is equivalent to 0.24mg of Buprenorphine pills. So, you could ask for 2 x 0.2mg pills at night. Cut one in half and take 0.3mg pills first night. And reduce very slowly that way. You can shave a small amount off each night to reduce.
You may even find that the pills do not cause the same night terrors.
I am in the uk, thank you for the advice but do you know if the patches can be cut in half? Just I have an ileostomy so I am not that good with pills I don’t always absorb them which is why we opted for the patches due to my bowel issues as we thought these would be kinder on the system. Thank you again 🙏🏻
I don't know anyone who has cut Buprenorphine patches. They do come in 5mcg dose, so you could ask for 2 x 5mcg patches and reduce by 5mcg . There are warnings against cutting the patch because they are supposed to last 5 to 7 days and cutting the patch may release ALL the 7 day dose into your body in one go. The 10mcg patch releases 0.24mg a day. A patch therefore contains 5 or 7 x 0.24mg.
I would NOT cut the Buprenorphine patch.
To deal with opioid withdrawals, you need to ask your GP for help.
Thank you so much I am so glad I asked you!! It’s been impossible to get hold of my gp and they have not been very helpful through any of this the pain man said it wasn’t the patches causing the terrors but after coming off the patches the terrors stopped so it’s a bit of a coincidence. I couldn’t cope today so luckily I didn’t cut the patch I just put the whole one back on and will hope for the best till I can talk to the gp I just need to try and be strong and remember how awful it’s been being off them and weigh up what’s worse the terrors or the pain.
Thank you again I am so glad I asked as I was very close to cutting it in half but thankfully I didn’t so that’s one blessing at least as that would of probably killed me if I had done that.
Thank you so much and I’m sorry for all the questions I just didn’t know who to turn to after the pain specialist was so rubbish and having no luck with the gp I just felt very alone and scared but I will monitor things this week and just try to find ways around the terrors or just hope and pray that I don’t get them this time xx
When you see your doctor you might want to ask about other opioids like oxycodone or tramadol.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you for the very detailed reply that’s so kind and helpful of you because I really have been so scared. I tried tramadol before but I cannot tolerate that it also gives me insomnia due to crazy heart palpitations and it’s one I would never take again I hated it, I tried oxcy and it didn’t help at all so then I was put on the patches because I cannot tolerate morphine I react very badly to that. I had a terrible night last night it was terror after terror I get up make a drink try to calm down because I’m burning up and have terrible nausea and just scared out of my mind then try to go back to bed and as soon as I close my eyes I’m back trapped in a terror I either wake up screaming or crying then today I’ve been shaking and so worried about anything and everything my anxiety is through the roof which isn’t like me at all I have lost myself in this process I want to take the patch off as it doesn’t even help with the pain but I will wait to talk to the pain man on Monday but I’m just worried I’ll have longterm side effects.
I haven’t had my ferritin levels checked in ages and last time it was very low due to endometriosis but I’ve had a hysterectomy since then so I will speak to my gp about the things you mentioned and follow what you said.
I don’t take any herbal supplements or anything like that, I also don’t take many other medications however I do have oestrogen hrt and I cannot stop that because I also have osteoporosis and me without oestrogen is not something I would contemplate then the other is just an antisickness medicine which I also need.
Thank you for your advice my pain specialist mentioned fentanyl patches but said to try the butec ones first have you any experience of the fentanyl patches because I’m very scared after what I am currently experiencing so I’m very reluctant to take anything.
Thank you so much for everything it means a lot to have support and advice because this has been such a scary experience for me nothing like I’ve ever been through and I’ve felt very alone even suicidal with it so thank you for taking thr time to reply and offer so many helpful things and advice 🙏🏻 x
The medication is Metoclopramide but I also have delayed gastric emptying and bile reflux post gallbladder removal surgery so I take these which do really help. I can’t take the other types like ondansatron is serotonin which I react to and Cyclizine doesn’t work for me as that adds to the delayed gastric emptying x
And that's another one that makes RLS worse. It blocks the dopamine receptors in the brain. Gaviscon Extra Strength Tablets and Liquids are are antacids if that is what you need. It is OTC. If it is anti nausea you need Kytril (Sustol, Granisetron, Sancuso) and Anzemet (Dolasetron) are safe.
No I haven’t unfortunately. It’s only the patches I have but initially they put me on the patches and pregabalin at the same time but I stopped the pregabalin after a week due to bowel issues. The terrors started with the patches I didn’t get them before and they seem to just be getting worse the longer I’ve been on the patches. I started them at the start of December so I’ve been on them around 6 weeks but the last few weeks have really traumatised me the terrors are so real and so violent I don’t even watch scary films or anything but these are day and night anytime I close my eyes. I know I’m in a terror but I can’t move and I can’t scream till suddenly something happens and I wake up either screaming or crying it’s over and over…..very distressing
Ah, I asked because antidepressants can cause parasomnias including sleep terrors and nightmares....
How distressing: Jools knows much more about buprenorphine than most, and her suggestions about methadone and gabapentin will be good. Best wishes for a speedy resolution!
Poor you. Nightmares & lack of sleep. Nothing worse.I am on low dose buprenorphine & it is wonderful that I no longer have RLS but like you I wake up after an hour & am as bright as a button so get up & do my emails etc in the night & then sleep off & on, off & on.
So am so tired during the day.
I have not mentioned this to the GP as I am just so thrilled not to have those nerves jangling.
Since a child I have been prone to nightmares but recently, aged 73, I wake my husband with night terrors.
Last night I screamed so loudly that I woke my son over from America who was asleep along the landing. I gave him one helluva shock!
I had not even thought it might be the buprenorphine.
How long have you been on the patches? I am really struggling last night was the worst yet it just kept happening over and over but I never had this before the patches so I know it has to be them as nothing has changed in my life just these drugs. I don’t get on well with drugs but initially I thought these were ok as I didn’t get side effects but slowly they have been getting worse and worse to the point now I just want to take the patch off but I’m scared of what the pain will be like without them as the pain is bad enough whilst on them so I’m really confused I’m just exhausted and scared 😞. I don’t even feel like myself anymore I’m on edge all the time and I’ve been getting terrible anxiety. I’m trying to last till Monday to talk to the pain man but I can’t carry on like this as I’m scared it will leave longterm side effects especially the terrors and lack of deep sleep or sleep at all. Thank you for sharing your story xx
I was advised by one or two of our members that the buprenorphine tablets are far more efficient than the patches, so I have never tried the patches.I have been taking the tablets for 6 months.
Thank you for letting me know but I would be scared to take the pills if they are stronger given my reaction to the patches so I think I need a different medication all together he mentioned fentanyl patches…..do you know anyone that’s tried these? Thank you for your help x
That’s a most distressing response to a medication that for many is something of a salvation. I suffer from PLMD only and it persists while I’m awake, which, whilst known, is unusual. So I don’t know how relevant my experience with Buprenorphine will be.
I started on the patches in the summer of 2022 and I found them frustratingly inconsistent. They tended to peel off and anyway their effectiveness fell far short of the manufacturer’s stated duration of 7 days. Additionally - and here there’s some crossover with your experience - I suffered from insomnia and vivid dreams (not so much nightmares).
Early in 2023 I persuaded my surgery to switch me from Bupe patches to sublingual tablets, at 0.2 ml to start with and now at 0.8 ml. Immediately there was an improvement in that the leg spasms that are the characteristic of PLMD vanished. However, the insomnia continued and so I set up an alternating regime of Zolpidem, Methadone and Zopiclone to tackle the sleeplessness. My doctors were - and still are - concerned lest I should become dependent on the two sleeping meds. But the low dosage of both and the interspersing of the Methadone have kept things in balance. Result: I’m getting decent sequences of sleep and although the dreams remain vivid, time has taken the edge off them.
Apologies for the detailed response, but hopefully there might be significant aspects of our shared experiences that have relevance to your situation.
Thank you that means a lot to me because I am struggling so much I had a terrible night and nearly took the patch off. The terrors are so violent and on my own I am just sobbing and shaking it over and over I get up to break the cycle but then when I lay back down it happens again. I tried to rest in the day today and it still happens it’s awful I had to listen to music to calm me down. It’s taken me over I have awful anxiety I’m shaking and just worried all the time. I had to go to the dentist today and sobbed my heart out to the receptionist and that is not like me at all. I will definitely be stopping at hear patches I don’t want anything like this because it’s clearly not right for me and the nausea is making it hard to eat as I just feel sick all the time. Ahhhh I’ve had enough but I will wait till I talk to him because Monday is patch change day anyway and they really don’t help with the pain so I just hope he can come up with a replacement he did mention fentanyl patches but said to try these first.
I take otc sleeping tablets and I’m already taking 3 and with my very low weight that would usually totally knock me out even one would have me sleepy but even with 3 I’m wide awake I hate it as I’m exhausted at the same time so it’s a nightmare.
Thank you for sharing your story and experience it really helps to have the information before I speak to him on Monday and to know I’m not alone xx
I a taking diphenhydramine 50mg only due to the stupid patches I’m having to take 3 of them. I can’t not take those because at least they make me drowsy and the gp won’t prescribe prescription ones for more than a week so I don’t want to use them and have them help then be told I can’t have them anymore. What about antihistamines I have some piriton and that always makes me sleepy I could try those instead…..thank you x
I’m so very sorry you’re having so wretched a time of it. It’s crucial that you get the best advice available as to how to proceed beyond the patches. Most meds will be unforgiving if you stop them abruptly so disengage from the patches carefully. If your current practice GP isn’t providing sympathetic and informed help and you’re on Facebook, go onto your local town’s FB page and ask for advice as to the doctors at your surgery, notably those known for their sensitivity and personal attention. And don’t hesitate to draw on the expert empirical advice on this platform. There will be a way out of the agonies. Just keep doing the internet research about side effects, keep the pressure on at your surgery, and keep in touch here. All the very best!
You are getting excellent support from Joolsg and others on the site but I thought I would just add my recent experience on buprenorphine.
I started on patches (2x10mg) but found them difficult to monitor. In other words they didn't last for the full week and it was difficult to actual determine the time of effectiveness. I assume you have found out that the patches do not last a full period claimed.
My GP changed me to tablets and I am now taking 2x200mcg (ie 0.4mg) per day buprenorphine and 75mg per day of pregabalin.
I find buprenorphine effective in blocking RLS but it does alter my sleep regime. I go to sleep and wake at varying times feeling as if it is time to arise. Trying to get back to sleep causes a feeling of nausea, shortness of breath and this can result in a panic attack.
I also experience bouts of sweating (usually in th morning) and a general overall feeling of depression
Your situation is clearly a lot worse and I am so sorry for you but as you have found from the various replies you are not alone in this.
Thank you so much it does mean a lot to know that I am not alone as I just don’t feel like myself anymore I had another awful night terror after terror I get up and make a drink and sit down stairs to calm down then go back to bed and this is over and over then I tried to rest in the day and bam the terrors are back. I burn up with it and even in this freezing weather as soon as I get into bed I can feel the heat radiating from my body and I also have the nausea like you which is awful that’s constant it came on after the first week of being on the patches.
I just need to speak to the pain specialist because I need to come off these and I was so close to ripping it off in the night but then I thought about the pain and stopped myself but I am losing myself with these terrors and pain…..I don’t find they even help for 4 days so they are not the patches for me. I remember at the start he said if these don’t help then there is the option of fentanyl patches but wanted to try these first even tho I was skeptical given my previous doctor experience with morphine and me telling him how I wouldn’t go anywhere near anything like morphine so I hope he can be more helpful this time. However the anxiety from the patches is making me so worried I’m shaking all the time and worried about everything but crying and scared so I have totally lost myself and worried this will be a lasting side effect 😭.
I seem to remember when I first used the buprenorphine patch I had something similar after 3 or 4 days use and one of other contributors (Joolsg I think) said this was unusual but put it down to the patch expiring quickly and resulting in an opioid withdrawal attack.
You should also remember that putting on a new patch takes 24hours or more before it becomes effective so you need to overlap them,
Yours sounds a much more serious rejection of the opioid but I hope you get some answers from other persons on this site. I doubt it will be long lasting so don't get scared
Thank you so much!! I don’t think mine is due to the patches wearing off as they are all the time and I noticed this week they were worse when I changed the patch early so it was stronger and that’s when the terrors really got out of control so it can only be the patches because nothing else has changed.
Thank you for reassuring me that it won’t stay with me long term because it’s very disturbing I’ve never felt so scared in my life……getting close to bedtime as well so I’m nerves but every day is closer to Monday where I’m just holding out all hope for the pain man I just don’t want him to be annoyed at me that I can’t take either of the meds that he prescribed but I did warn him how sensitive I am to medication.
Thank you again for taking the time to message me it means a lot x
You are welcome as I know what it is like to walk the house all night because of augmentation.
If the problem got worse after putting a new patch on early then it must be that you are intolerant of buprenorphine and I would take off the patches because you are not suffering from an opioid withdrawal panic attack and it sounds as if they are not blocking your RSL either?
I don't suppose you have any oxycodone to hand as this may just help until you see your doctor next week?
Please do not be afraid to voice your worries on this forum as you will get a lot of support.
Thinking of you and hope you have at least a better night knowing that people on the site are there for you
Listening to your tale of sleep terrors breaks my heart. I'm not experienced with bupe as I'm on 10mg/day of methadone which is working brilliantly for me. But I wonder if it's just that you're especially sensitive to bupe and would do better if your dose were dramatically reduced. Were I in your situation, I would try reducing the patch size by 25% and seeing whether that improved my condition. I know that reducing by too much at once could be dangerous, but by 10 or 15 per cent I don't think would be.
it's a shame your"pain man" has not been available so that you could run my suggestion by him without fear. Best of luck!
Thank you that means a lot, it’s been a very scary time for me……I thought the pain and sleepless nights was bad enough but this really has pushed me over the edge so thank you for being so kind.
The pain specialist didn’t mention methadone last time we spoke because he seemed so adamant this was the right path having the patches and pregabalin. I spoke to him after a week of being on both and I said I felt zero effects no side effects but also zero impact on pain which was true but when I changed the patch in week 2 everything hit me at once and that was just a few days before Xmas so I had no one to ask for advice and it was so confusing. The pregabalin was awful for my bowels so violent and I was getting too weak so whilst I did feel the benefit of those I couldn’t continue but without them all the negative aspects of the patches just got worse and worse.
He did initially mention fentanyl patches but wanted to use these ones first…..have you had or know anyone’s experiences of fentanyl patches? I will ask about methadone on Monday 🙏🏻, what dose do you take? Is it a patch? Thank you xx
Hello MyStar86. You have been given lots of good advice. I want to add my concerns. You are currently using the B. patches for pain only or RLS and pain? If for RLS then I am concerned about the “trigger” meds you are taking. The more trigger meds you take the more RLS meds you will need to take. Diphenhydramine or any OTC sleeping meds can be a major trigger of RLS. Other meds also, as others have mentioned, like hrt and the anti nausea med you take. I understand you have to take these. I am just so concerned for you and keep thinking, are you very sure there are no alternative meds for you? Trigger meds are a very big deal and I worry you are going in circles. I know, easy for me to say since I don’t have your medical issues. The other thing on my mind is methadone. I have tried almost every opioid out there for my RLS. The only one that has not given me problems with sleep is methadone. Maybe you could discuss this with your doctor. Wishing you peace and please keep us posted on your progress.
Hi There, I have been taking codeine for many years and have often experienced nightmares. I noticed that the nightmares came only when I was sleeping on my back.This may seem a little ridiculous but when I rolled onto my side and went back to sleep, no more nightmares. I know it sounds crazy but it worked for me. Good luck.
Thank you for sharing your experience, I wish that was the case for me but I never sleep on my back as I have a bad back so I can’t do that im always on my side I have to get up to break the cycle like now I’m up after a really awful one so I’m scared about when I have to go back and lay down because all I want to do is sleep but I don’t think my body knows how to anymore 😞. I have always gotten on well when I’ve used codeine for my back to travel and after surgeries but I thought it was only morphine that effected me badly however after the way I’ve reacted to these patches I will be very skeptical going forward because I never want to go through this again. I will be very honest with the pain specialist because I don’t want this happening again I need pain relief but nothing that’s anything like morphine because now my mental health is shot to bits I feel like such a mess.
Thank you that’s very kind of you!! I just find it all so confusing and scary I wish I could not have any drugs at all but life isn’t that simple when it comes to pain so any ideas or advice is always welcome so thank you for being so kind and thoughtful x
I agree, it is very scary and confusing. I think especially so because the medical community often is of little help. I have more thorough and specific info here in 2 weeks than in years of being treated for RLS. Admittedly, it has been in part because of my own resistance to seeking help. But that is a whole other story. Good luck to you.
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