Hello everyone, I have been taking 0.4 mg buprenorphine sublingual tablets for the last six nights - beforehand I was on the 10 mcg 7 day buprenorphine patch, however I found this really inconsistent with it only really helping my rls / periodic limb movements on nights 3,4and 5 ….
I am finding that the tablets cause me to sleep deeply at night with 2 or 3 break through periods of rls which can be quite quickly walked off. However during the day I am still more or less comatose - I am unable to do much at all and all I want to do is sleep. Furthermore when I do sleep in the day I wake up feeling more unwell - and most of the time I don’t feel awake enough to drive.
I was initially also on 150mg of pregabalin which I have dropped to 125 but I am aware I can only lower this by 25 mg a week so it will take some time to reach a notably lower dose.
Other negative effects are horrendous constipation not relieved by the usual remedies and a distant headache which is always there.
Does anyone have any advice? Will this day time exhaustion / drugged state become less once I have taken the drug for a couple of weeks? I am hoping that once the pregabalin is at a much lower dose it will all work out but am feeling very negative and quite depressed at the moment - it has been a very long journey to even access these tablets and nothing else has helped up until now.
Thank you fir any comments, Dawn
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Drls
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For the daytime sleepiness you might want to take adderal or ritalin in the morning. They will wear off before evening o won't affect your sleep. For constipation you might want to try magnesium citrate or an OTC laxative. For the headache have you tried tylenol, or advil or aleve? The side effects usually go away in a few weeks.
I am so glad I live in the US where it is easy to change doctors if one gets one like yours. What does s/he expect you to do if you stop all RLS related medicines - just suffer. RANT OVER as one of our other forum members often says.
If the magnesium doesn't work, other recommendations for constipation are to drink lots of fluids and get plenty of moderate exercise. Eating 5 or 6 prunes a day or prune juice works but that may cause abdominal pain. Eating two kiwifruits a day relieves constipation in about half of people without the side effects of prunes. Drinking oolong tea or Smooth Move tea helps. There are others if none of these works.
Hi again Drls - Be careful about drinking oolong or many other types of herbal teas if you are taking a blood thinner as a lot of them have blood thinning properties and could cause a bleed when added. I know this from my own medicine taking and I note you had a TIA a while ago. I hope this helps. Take care
hi Jelbea - yes I take aspirin daily and also thyroxine for under active thyroid so I am careful about what I take - like many of us there are a number of things to take into account - thanks for your advice x
Hi Drls - I note that you were using a buprenorphine patch of 10 micrograms. This is equivalent to 240 micrograms in 24 hours. You are now taking 0.4 milligrams which is equal to 400 micrograms. This is quite an increase and you are bound to feel it. Also as you found the patches were very "patchy" in their coverage of symptoms. I was on patches for a long time and also found that they only worked about 3 days out of the 7. I would think therefore that you were not really getting the full 240 mcg daily.
This quite marked increase could be contributing to your extreme exhaustion. Regarding the constipation I do not have any trouble. I eat good amounts of fruit and vegetables and of course drink plenty of water.
Do you take the 0.4 mg all in the one dose? Joolsg takes 0.2 followed by 0.2 two hours later at bedtime and she finds this very satisfactory. I take 800 mcg split into 200 at lunchtime, 200 early evening and 400 mcg at bedtime and at present this is keeping me reasonably RLS free.
I do hope you get this sorted but it might be just the sudden increase in dosage and the fact that you are now getting it all as opposed to the patches. Good Luck
I agree with Jelbea, you have doubled the dose, so try reducing the 0.4mg by cutting in half and try 0.2mg for a few days.150mg of pregabalin is a high dose and you will not need it if the Buprenorphine is covering the RLS. So reduce by 25mg a week tp avoid withdrawal symptoms.
For the constipation, magnesium citrate every night, 2 or 3 capsules really helps. And lots of brassica.
I think the headache will settle as you reduce the pregabalin.
Opioids can cause depression so keep an eye on it.
Hi Jools, unfortunately the pills I am on are the morningside ones and can’t be cut - I am on this dose on trial and will have to put my case to my gp to get any more - he refused in the past but now prof Walker has prescribed the first lot I’m hopeful he will rethink, however I feel under pressure not to go back to him with further issues which really is not helpful.
I agree with Jelbea, enough fruit, veg and water should really help - I had taken my eye off the ball a bit in this regard but am back on it now so hopefully the constipation will calm down.
I think I basically knew what I needed to do but I just wanted some support - constantly fighting your corner gets very wearing … I think I really need the bigger tablets moving forward that can be split and also to continue reducing the pregabalin - hopefully it will all work out - thanks everyone
Accord brand are the largest 0.4mg pills and easy to cut in half then quarters The Morningside are tiny! Impossible to cut.My local, independent pharmacist knows to order Accord brand now. Speak to your pharmacist, they are good at calling around to get the correct brand.
Sorry, but I do not completely agree withJelbea and Joolsg. The amount of buprenorphine theough a patch and a sublingual tablet cannot be compared directly, as the absorption rates may differ. However, there a no good data (to my knowledge) about patch absorption rates.
Nevertheless, they may have a point that I support, in that tour current sublingual dose may work out for you as a higher dose that you got on the patch. Try cutting the tablet in half or even quarters, and take half a tablet first, and additional quarters only if needed.
Finally, I want to say that I do recognise the daytime drowsiness, although mine doesn't seem as extreme as yours. I have taken ritalin occasionally to counteract mainly the associated brain fog, but my neurologist is far from keen on treating each side effect with yet another strong medicine. I do agree, also because daily use of ritalin dosn't suit me either. Yes it helped a bit, but also caused mini-withdrawals, in the form of restlessness. One has to learn to find an acceptable balance. It is an art!
Good luck, I hope your drowsiness will settle, one way or another.
Have you tried flax seeds? You can either put a couple of teaspoons of them in a cup at night and pour boiling water over them. Then in morning, either drink water or better yet, add to a breakfast cereal. I gave that advice to a friend who had suffered all her life. About 2weeks later she ran up to me, raving how well they worked for constipationGood luck
Flax seeds are certainly great for relieving constipation, but please do be careful as they can interfere with other medications -thyroid and blood thinners. Just check what you are on is ok with the seeds.
Oh, ok. Well good luck with Ur journey. Re buprenorphine. I'm also on it. 1mg daily but I know half each tablet. Please take reduction slowly so you don't suffer withdrawal
I found pregabalin to be very sedating. To the point where I could not wake up in the morning unless my wife loudly woke me up. After tapering off and stopping the pregabalin the tiredness went away.
Also while I was on pregabalin I had the worst PLMD and it was scary to see video my wife took of me shaking in bed.
Granted, everyone reacts differently to drugs, but my advice would be to talk to your doctor and taper off the pregabalin. I think it is not a good drug.
Good luck ! I know what you’re going thru. It’s a struggle for me too.
I also had extreme daytime fatigue. It turned out that in addition to severe RLS I also have severe obstructive sleep apnea. My CPAP machine made the difference. I was so thankful for a treatment that did not involve more meds! I finally found a physician that prescribed 10 mg of methadone. It is magic for me! 5 mg at bedtime and another 5 mg when/if breakthrough occurs about 2 a.m. It is inexpensive and I experience no side effects! I am finally sleeping! What a difference after a 15 year search and battle. Also, for me Smooth Move tea is dependable, mild, inexpensive as needed.
Pregabalin is said to potentiate opiods, meaning it makes the effects of opioids stronger. Perhaps as you say, coming off pregabalin may help with some of the side effects you're experiencing.
how strange I was just laying in bed thinking how I was going to comment on my condition as a lifetime sufferer I was prescribed Buprenorphin@ about two years ago and I had to go up to 8 mg before it started working. I don’t have restless legs with this medication but I also am so exhausted and I usually take my pill around six or 7 PM. I am in bed by nine or 10 and I sleep till nine or 10 or even 11 the next day and I know I am sleeping because I’m dreaming, but I don’t rest. I am so exhausted that’s all I wanna do is lay down . I’m grateful to be able to lay and not have the legs freak out. I just want some energy and I too cannot get a doctor to prescribe Ridellan or anything else that was give me some pep even with a diagnosis of ADHD. Over 20 years ago it’s such a hassle!!! I just want you to know you’re not alone . 🙁
Hello Ticki, I’m still trying to lower other meds in the hope that I can get back some energy …. But at the moment I feel like I had more energy and was more myself when I could only sleep for 2-3 hours at any time ….., and as you say whilst I’m so grateful not to have the torment of rls all the time I also don’t feel like a proper person or able to do much at all.
Thank you for your support. Have you tried cutting your dose down again now that you are stabilised? I’m thinking you might need less now? X
yes I have decided to start doing that. I’m going to cut the 8 mg in half tonight and see what just a half does.Hopefully I’ll have no issue with that and may be can even go lower. There is no higher milligrams that I will be allowed to take on this medication anyway and the doctor has made it pretty clear that we have ran the gauntlet and there’s not anything else he can think of to do,so I am hoping that does make a difference and I have to say I think I had more energy and got more done with the two or three hours of sleep a night too, isn’t that weird? I guess we can just say it’s all weird best of luck to you hon. 💜
I also had this problem when I was on a higher dose. It kept me awake at night and extremely dopey during the day - definitely could not drive on most days. By taking it earlier, I’ve been able to go down to just 200 mcg sublingual. I take c. 180 mcg a few hours before I hope to sleep, after some food. I may then take the rest i.e. c. 20 mcg just before sleeping, but also after having had a small snack consisting of crisp bread. The crisp bread prevents opioid related tummy pains and seems to help me get sleepy so that I can keep a more normal schedule and not sleep through the day. I’ve been using medical cannabis for a while but it doesn’t seem to suit, so I have been off it and don’t have a final answer yet.
Now, after about 7 months of using Buprenorphine and keeping the dosage low, I am not that tired in the day time. I have some hope that I can work this out.
Bup is a kappa antagonist and that may be the reason it causes low mood and fatigue. I’m hoping to find something that could counteract this effect, but there are no such medications and so I’m still hoping to find a herbal supplement that could help. It’s a bit of a long shot but I can’t cope without the Bup.
As a side note, it’s worth cutting out all supplements (including vitamins) you may be taking as well because some of them can increase this problem.
In regards to the constipation, the only thing I tolerate is chia, so I have it every day. It’s much gentler than psyllium or anyting else on the marke.
Hi, I am also on 10mcg 7 day patch but am scheduled to see my pain Dr about switching to???? Maybe back to Targin to see if it helps more now after a break.
My rls has been controlled enormously by the Bup but I constantly fall asleep every evening as early as 7pm, once even with a cup of tea in my hand, seem to have no control over this, then have trouble sleeping at bedtime. Often again at 10 or so.
Also shocking bowel pain, constipation occasionally and other issues
Please let me know how you get on with what you choose, it’s hard to weigh up the benefits against the side effects I know.
hello nanpat, the targin never helped my rls particularly and the patch only really helped on days 3,4 and 5 even when I changed it more often! I think whatever you feel worked best for you …. I think often it’s a difficult decision because for many of us none of the available medications work very well and they all have significant side effects.
I’m now reducing my pregabalin and taking the buprenorphine earlier … I’ll see what happens and let you know. Best wishes Dawn
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