I’m curious if anyone else has had sleep/breathing issues with buprenorphine. I use a sleep tracker and it started alerting me to a very serious sleep apnea problem which I have never had prior to buprenorphine. I have struggled with bup anyway. It helps the RLS for sure and it is the only thing that helped me finally get off of pramiprexole after 5 years of trying and 20ish of taking at a final dose of a minimum of 3mg/night. But my mornings with buprenorphine are hard, I’ve moved my practice start hours back from 7:45 to 10:30 and I’m still sort of groggy most of the day everyday. I kind of hate it. But it works and I’m free of stupid pramipexole. Feeling like the Bup was perhaps the problem with my breathing and the apnea warnings, I pulled over to (gasp) pramipexole while lowering the amount of Bup over two weeks roughly and watched all of the warnings disappear and the awful grogginess go with it. I guess the two together make sense though overall. So, here I am. Trying to figure out what the hell to do next. I can’t believe I’m thinking about going back to pramipexole but I know how to get off of it now so maybe? Can I maintain a low dose of prami and when augmentation starts pull over to buprenorphine for a time and maybe just switch back and forth???? Anybody have any thoughts on this?
Secondary question -does anybody know or has anybody done any research on the vagus nerve and RLS???
As always, thank you!! Happy Mother’s day to all of you out there too!!
erin
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erinjee
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Buprenorphine and other opioids can impair respiratory function and "should be used with care in patients with respiratory insufficiency (e.g. chronic obstructive pulmonary disease, asthma, cor pulmonale, decreased respiratory reserve, hypoxia, hypercapnia, pre-existing respiratory depression or kyphoscoliosis)."
I'll leave it for others with experience of these medications to advise further.
thanks, I’ve been trying to read on it and got some of that but I don’t have any of the other pre-existing things in the mix. It seems like maybe my body just isn’t a fan of the buprenorphine overall.
-they did very little for me overall. Minor relief from RLS but major breakthrough. They just kept adding on with a Xanax or a clonazepam and on and on which I was not a fan of. It’d be lovely to be on less not more 🫤.
You may not have taken enough or in the correct way. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you decide to try it again, you would need to come of the buprenorphine first as taking them together can increase the breathing problems.
You may be right Sue. I can’t quite remember but feel like I did take 200mg and maybe tried to move up to 300 but my body didn’t seem to approve. I ended up feeling fairly off/wonky with it. But I hadn’t completely been able to get off of the pramipexole yet either so I don’t know what’s what there.
Are you talking 200 mg gabapentin or pregabalin? Also did you give it a few weeks for the side effects to lessen or disappear? And it may have been the pramipexole.
Oops sorry. I’m not currently taking pregablin. I took it for 2 months I think. This is now:
I still have a prescription for clonazepam from same doc who prescribes buprenorphine but I don’t take it but once every 4 or 5 months - when I end up with the intolerable breakthrough in the arms. It feels like too much sedative for one person AND it also seems like I’m a slow metabolizer of these things overall. I don’t take any other benzos, sleep aids, or otherwise I take Lisinopril and thyroid (not together) in the mornings and all my vitamins as would be expected for ‘us’ at diff times I was taking 2mg sublingual of buprenorphone. In these two weeks of coming off to test the theory on the breathing and apnea stuff, I started at .5mg prami and then did several days each on lower amounts of the buprenorphine. I bumped the prami down now too so it’s .25 now and no buprenorphine for the last two days.
Sorry Sue, I missed your question! So far yes, it seems as if it's better. Hoping I can get the prami gone and then stay at the lower dose of buprenorphine as suggested. Thank you so much for all of the information and time you share here!
Dr Berkowski has recently stated that Buprenorphine has the lowest risk of respiratory depression. However, we all react differently to opioids and you may be very sensitive to them. Are you on any benzodiazepenes or gabapentin/pregabalin as well? They can cause respiratory depression when combined with Buprenorphine.What dose are you on? Maybe reducing it slightly would help.
As for going back on Pramipexole after being on the highest dose I've come across, be VERY wary. Your D1 receptors are probably permanently damaged after so many years on such a criminal dose and augmentation would likely hit very, very quickly.
I would ask for a sleep study to check your sleep apnoea.
that’s what I’m afraid of too. When I finally realized how high my dose was and how ignorant my doc was about it I was so angry. I had an unbelievably rough time getting away from it but have also gone back to it twice out of necessity for a month each time before having knee replacement surgery left then right- and having to have buprenorphine completely out of my system before that I have no idea really if it was awful in the other side because I was on the opiate side post surgery and then just moved back over to buprenorphine
I still have a prescription for clonazepam from same doc who prescribes buprenorphine but I don’t take it but once every 4 or 5 months - when I end up with the intolerable breakthrough in the arms. It feels like too much sedative for one person AND it also seems like I’m a slow metabolized of these things overall. I don’t take any other benzos, sleep aids, or otherwise Lisinopril and thyroid (not together) in the mornings and all my vitamins as would be expected for ‘us’ at diff times
I take 2mg sublingual of buprenorphone. In these two weeks of coming off to test the theory on the breathing and apnea stuff, I started at .5mg prami and then did several days each on lower amounts of the buprenorphine. I bumped the prami down now too so it’s .25 now and no buprenorphine for the last two days.
I hope you don't get bad withdrawals while you test the theory.If you start the Buprenorphine again, you could start on a lower dose. I know the pills in the US are much higher doses than in the UK. Here they start at 0.2mg. Maybe 0.5mg or 1mg would not cause the sleep apnoea.
oh that’s really interesting and a good idea. I’ll try to keep it lower for sure. Wouldn’t that be great if it fixed the problem!!! I’m so tired of this up and down back and forth as I’m sure most of us are. Thanks so much for your help!!!
Hi there I started Buprenorphine several months ago and was waiting to post an update here, until I had sorted my dosage issues out and am happy with my progress. However, after reading your post, I thought I'd 'chip in'. I think your issues MIGHT be related to the amount of Buprenorphine you take, daily.
Your experience with Buprenorphine (apart from the sleep apnea) sounds very similar to my initial experiences. Severe nausea, drowsiness, groggy feeling, exhausted, etc... I was prescribed 2mg sublingual tablets. However after experiencing the symptoms, I purchased a pill cutter and now quarter my tablet. I then crush it up and take just a little less than a quarter, at night.. Therefore, I take approximately 0.4mg sublingual each night.
I find that although I still experience some RLS breakthrough symptoms - it's still much better than it was when I took Pramipexole AND my symptoms of grogginess etc have now disappeared.
it all helps, I appreciate your info. I did start out at lower amounts but kept hanging the breakthrough problems. I am wondering though if maybe coming off of it here for a few days maybe I can try again at the lower dose and see if that helps. At least I can try! Thank you! I’m glad you have found some relief!!!!
that’s really interesting. I do not use a patch but I do the HRT pellets, full hysterectomy about 10 years ago. I’ll have investigate more. Thank you!!
I don’t love hearing that but definitely can say I know mine existed before the pellets I guess. But I do wonder if that’s part of the struggle now. I had no idea there was any kind of connection with the hormone side of things. It’s literally a game if damned if we do damned if we don’t with RLS I swear.
Have you seen anything on doxipen or on the vagus nerve in relation to RLS Sue?
erinjee, I’ve had RLS ever since I can remember. It was occasional, usually when I had some caffeine or another trigger. I had no clue about triggers then, had never heard of them. In 2005 I started the hormone pellets. I loved them and felt great! But my RLS became chronic and I had symptoms around the clock. I didn’t want to believe that the hormones were the cause. Very shortly after I saw a commercial for requip (ropinirole) on tv and asked my doctor to prescribe it. I knew nothing of the drug and neither did my doctor. Worst mistake of my life. I stayed on the pellets and ropinirole for about 15 years. Increasing ropinirole continually. I had never heard of augmentation. I thought my RLS was just getting worse. One night when 8mg of ropinirole did nothing to relieve my symptoms I combed the internet a found Dr B. That’s when I stated my long and painfull journey to get off of ropinirole. Of course I stoped the pellets at that time because dr B. said they could be a problem. Because of the damage ropinirole did to my receptors my RLS never went back to occasional. So I feel as though I sold my soul to the devil to have the fantastic benefits of the hormone pellets. If I could go back, knowing what I know now, I would have stopped the pellets as soon as my RLS symptoms became chronic, which was right away. The sad thing for many of us with RLS is not only the fact that we suffer from it but the fact that we can have such limitations in our lives. Like limitations on what meds we can take and what foods we can eat and drinks we can drink. Insult to injury. Best of luck to you.
Yes doxipen can make RLS worse. Why are you considering taking it? If you can tell me I may be able to find a safe substitute. For vagus nerve - type it in the search box above to see other posts on that subject.
it’s a suggestion from my doc. She said the low dose can help with skin issues - I have super sensitive skin, react to basically everything in an allergic kind of way but not allergic. The itch can wake me up in the middle of the night as much as RLS can, it’s a toss up. RLS managed-itching can kick up. But the itching is an always with it without the RLS. So doc suggested trying 3mg to help with skin and the “insomnia” which is her code for RLS.
That is likely to make your RLS worse. There are many creams for itching that won't so I would ask for her to suggest another one and I can tell you if it will make it worse.
I’m reading your reply again after weening back off of the pramipexole (again) and your words couldn’t be more true. I didn’t actively realize that I had not experienced any RLS symptoms in my arms really since getting off the pramipexole originally and felt that within days of it being back in my system. Pulling off of it again, even with a very small amount in comparison to any prior amounts and it only being in my system for 2-3 weeks doesn’t seem to make much difference to the withdrawal. This was not my smartest idea. At least this time around I know it’s achievable but I’ll NOT be adding the pramipexole back into my world again.
Hello erinjee. Do you suffer from COPD (Chronic Onstructive Pulminary Disease) if so the Buprenorphine does cause breathing problems and can affect sufferers seriously. You have already confirmed this having withdrawn from it.
There are several medications that can be prescribed when withdrawing from a Dopamine Agonist RLS treatment which severely affects breathing with those with issues with their lungs. I find a great deal of information in the reports and algorithms written by the Mayo Clinic, as well as members of this forum who have a great depth of knowledge on the subject ie. Sue and Joolsg. We who have other issues as well as RLS have to be careful that what medication our doctors prescribe for RLS doesn’t have a contra affect on the additional ailments. Unfortunately the medical profession has limited in-depth knowledge of RLS and it’s treatments and appear to not have the time to full research it.
I wish you luck and hope that you find a satisfactory solution
hi HipHoo, thanks for your info. I do not have any other major issues (yet I suppose). No copd or heart or other breathing stuff going on. Crap thyroid, maintained blood pressure, some brand new knees and allergies galore 😂 are my biggest issues.
Hello erinjee. Sounds like you have quite enough other things going on as well as RLS, doesn’t seem fair does it but we have to carry on and do the best we can with the information and help the forum provide for us.
I very much feel like RLS is a bit of a catch-22. Lack of sleep, poor sleep literally leads to every issue under the sun right? I am glad that there is more information out there these days and that it’s at least finally recognized as a medical issue. Thanks for the well wishes, all the best to you too and thank you for your help!!
eczema is probable-just not directly diagnosed (yet) - I just responded to you about the doxipen. Allergies that are actual allergies that showed up when tested are the season regulars. Pollen/ragweed/cedar I think. Here in Oklahoma that may as well be on always. It’s been the hard part, try to do the nasal spray but recognize they all have issues. Taking the Zyrtec before I took buprenorphine helped with original rash and itching that seemed to come with but that also eased when I started spitting out the residual left over from the sublingual. Ugh - hope that all makes sense. Lots of words.
I would go back to your specialist & schedule a sleep study because breathing difficulties in sleep can be dangerous. I withdrew from Prami last year and tried a lot of different things that had bad side effects for me. I now take the lowest dose of Sifrol (prami) from time to time as my RLS is not so severe. I also take Panadol Osteo for hip problems & sometimes Meloxicam (a strong anti inflammatory). These also help me sleep.
Don't rule out that the source of breathing problems might be from the Pramiprexole. If you read the list of side effects you'll see far down on the list "fibrotic complications". I had breathing problems for years on it. I had to sleep sitting up because when I would lay down I would get chest pain and experienced shallow breathing. As soon as I was off that drug, these complications disappeared. I have cut and pasted that the text of that complication.
Fibrotic Complications
Cases of retroperitoneal fibrosis, pulmonary infiltrates, pleural effusion, pleural thickening, pericarditis, and cardiac valvulopathy have been reported in some patients treated with ergot‑derived dopaminergic agents. While these complications may resolve when the drug is discontinued, complete resolution does not always occur.
Although these adverse reactions are believed to be related to the ergoline structure of these compounds, whether other, non–ergot-derived dopamine agonists, such as ropinirole, can cause them is unknown.
Cases of possible fibrotic complications, including pleural effusion, pleural fibrosis, interstitial lung disease, and cardiac valvulopathy have been reported in the development program and post marketing experience for ropinirole. While the evidence is not sufficient to establish a causal relationship between ropinirole and these fibrotic complications, a contribution of ropinirole cannot be excluded.
thanks for the information. I have been off of the prami for maybe 2 years now, 2 1/2? This has all started with the buprenorphine. I have spent the last two weeks playing with pramipexole again trying to figure it out. As soon as I got the Bup stopped, the breathing warnings stopped.
I have a severe form of RLS and have repeatedly augmented on meds that worked well for a time before turning on me. Most recently, Pramipexole was the devil. My doc reduced the pramipexole to 0.125 mg and gave me Suboxone (8mg buprenorphine/2mg naloxone, sublingual tablet). I take one of each about 9 pm each night. While I have some occasional late afternoon breakthrough, after the meds kick in I routinely sleep through the night.
I was contemplating reducing the buprenorphine since my Doc feels that suboptimal doses of two drugs with different mechanisms will be more effective. But, as the side effects have been almost nonexistent, I have not made this a high priority. If you go this route, you will need to be hypervigilant to avoid raising the prami dose.
it’s super interesting to know that you are doing that. I think my sensitivities are similar and it might be due to what kooks said about having damaged dopamine receptors now. I’ll talk to my doc about it though and see if we can’t figure something out. Thanks so much!!!
My daughter has been on Suboxone first and is now on Subutex. She developed an allergy to Suboxone (unknown at the time) of a rash over most of her body and so was switched to Subutex. What I’m getting at here is perhaps the breathing problem or sleep apnea is an allergic response and switching brands or even dosage amounts and times may help. It’s worth a discussion with your physician and you may have to be insistent as at the time of her developing a severe rash it was an unknown response and was met with skepticism. I wish you good luck as Suboxone has been a miracle drug for her. She is leading a very “normal” life with no RLS symptoms and no more depression or dependency issues. It has literally saved her life.
I think I did have a bit of an allergic reaction to the buprenorphine when I started taking it actually. I def got a weird spotty rash and with it without rash I would get itchy. I had the same experience of being told that was weird and prob not the bup. I started taking my Zyrtec allergy med before taking the Bup and that seemed to curb it for the most part but I wonder if you’re right about all of that. I haven’t been taking the Zyrtec at night (if at all) anymore trying to keep it opposite of any potential RLS issues. I hadn’t thought about that at all. Thanks for the information!! I’m glad your daughter is doing so much better!!
What’s really weird is that her doctor dismissed an allergy at first. Then, she started swelling, especially in her extremities to the point she couldn’t wear shoes. Doctors dismissed that as being a known allergic reaction to Suboxone. But, it kept happening and they finally listened. What’s really interesting is that they now officially list swelling as a possible allergic reaction after they had other patients complain of swelling as well. Hope this really works out for you as it sounds like the Zyrtec does help. Wish you only the best.
it is weird and I’m glad to know that your daughter is being listened to more now also. I haven’t gone back to the Bup side effects in a bit but will now. Thanks so much!!
Question for you and anybody else. I had forgotten that midway trying to figure out the weird itch response and rash that sometimes came up I came across other info about the sublingual pill and letting it dissolve but then spouting out the remaining saliva rather than swallowing. That is apparently something I should have been told along the way but never was. When I started doing that, the itch and rash were loads better than before. Was your daughter told to do that?
She was not told that as far as I know. In fact, I know she has to let it completely dissolve and she then drinks coffee to get rid of the awful taste. By spitting out your saliva aren’t you diluting the dose?
hasn’t hurt a thing on my end.I’m letting it dissolve and stay for 20 minutes prob. By that time the sublingual part has done its thing and in my system. I’m not sure what the actual right thing is there or if it’s different for subutex vs Suboxone there’s so much bad info out there but it did seem to lessen any reaction I was having and not change its effectiveness on the RLS side.
erinjee, I have experience with Buprenorphine so if you don’t mind telling me, how large a dose do you take and are you using patches or is it administered another way? Thanks, Pepper2012
I was taking 2mg sublingual. Right now I’m taking the .25 prami and no buprenorphine for a few days. I weened down from the Bup over 2ish weeks. I started with a smaller dose orig but kept having breakthrough so she said to play with it until it worked. That got me to the 2mg dose. I was getting alerts for apnea with the 2mg Bup. None since coming down/off. I’ve been taking buprenorphine for just over 2 yeas -having taken 5 plus years trying to get off of pramipexole after taking that for 20 plus years, highest dose of 3plus mg per night.
I use a buprenorphine patch, which dispenses 5 mcg per hour. So over 24 hours I think that would be 1.2 mg. At that level, I don’t have any of the issues you described, however, when I took a higher dose (7.5 mcg per hour), I did. I take the Bup for arthritis pain primarily. I take a small dose of Pramipexole of no more than .125 mg per night for RLS.
-and you’ve been able to maintain that? I wonder if the patch would be a better option for me. I’ve not actually known that to be a thing. Thank you!!!
Hi Pepper - you are getting 120 mcg daily from your patch. This is equivalent to 0.12 milligrams and not 1.2 milligrams. The 5 mcg patch is really quite low. It’s good that you are getting relief at this level.
Hi Jelbea, your correction re the 0.12mg daily on a 5mcg/h patch is correct. However, and this is relevant to all, amounts provided by patches do not compare directly to amounts in (sublingual or normal) pills. The important thing is that the absorption from the patch is different from that of pills. And, the absorption of sublingual pills is different, and usually higher, than of pills that you ingest. To keep in mind when you compare various administration routes.
@erinjee, I am also on a buprenorphine patch of 5 mcg/h. Works well, although this dose is low and you may need more. But starting by lowering your current dose seems wise. Always try to find the lowest effective dose.
Hi LotteM - Thank you so much for your detailed explanation. I have seen the wrong calculation of micrograms to milligrams a few times on the site and just felt I should draw attention to it in case of errors in dosage.
As you know I was on the patch for quite some time at a strength of 15 mcg and eventually the patch was only lasting 3 days out of 7, so for me this was not good. I am now on sublingual bup with better results. I am so glad the 5 mcg patch is working well for you.
I experienced breathing issues when I first started Buprenorphine patches. The reason was that massive dose I was prescribed at 52.5mcg. I felt I could not breathe. I received a lot of help and advice from Joolsg and Sue and managed to eventually tolerate sublingual Buprenorphine at 800mcg. I also take Pregabalin 50mg before bed. I'm no longer breathless but I occasionally get a sensation of being unable to inhale deeply.
I know that sensation, that’s interesting too. But your 800 mcg is still less than the 2mg I was taking right? All of the information you guys have shared seem to point to trying to lower my dose of buprenorphine. Thanks so much for your reply!!
Hi there! I have been taking a regimen of 1/4 of the 2 mg Buprenorphine , 900 mg of Gabapentin and 1/2 of the .25mg Xanax each night. I'm only 4' 11" on a good day and tiny, but that is the cocktail that works for me without side effects. I have not noticed breathing issues, even if I take 1/2 of the Buprenorphine on occasion. Have you tried lowering your Buprenorphine or using the films you put on the inside of your cheek? I wish I had known several years ago that so many of my foods/drinks are triggers, because it would have saved me countless experiments with the various medications which just made me feel worse. Best of luck to you!!!
I am working on the lowering the dose thing right now and hoping that will fix the problem. I had jumped over briefly to the pramipexole and am almost completely back off of that. Hoping to start at that quarter dose or less. I wish buprenorphine sublingual came in lower dose than the 2mg - it makes it a challenge to get less that .5 at the start. I haven't tried the film, I was going to ask my doc about it when I see him in June. I'm just not very confident in having those chats with him. I think docs who have been using methadone and buprenorphine here locally are so used to substance use issues as the only use and don't know how to generalize the information outside of that. With your combination, do you feel tired during the day?
I have suffered with a rare lung condition since pregnancy 26 years ago.
The specialist ps tried everything then they said to right letters to my children that there was nothing that could be done. Ventolin makes it worse a random doctor prescribed testosterone compound I0it worked in minutes. My husband and I could not believe it after 2 years of being unable to speak or walk I was gasping for breathe 24 hours a day.
God bless my body my doctor years ago said girl if anyone is going to be different it’s you .Sadly never a truer word spoken .
I had terrible issues with respiratory depression on 20 mg slow release oxycodone I could tell when the oxy had kicked in because my lungs were virtually paralysed, the lengths and risks we take to be rifle of this disease.
I have had no issues with Buprenorphine.
I tell everyone it is not unusual to be tired for first 6 months on Buprenorphine.
You are finally sleeping and the body want pay back it is a real thing , I leant this in the world of treating Bipolar patients with Epilum after years of not sleeping the epilum balances them out and the body demands payback 6 months seems to be the limit.
I also tell everyone to cut their Buprenorphine into tiny pinheads with pill cutter which I still do every night nearly 4 years now. That way I never take more than I need.
Doctors worrying about us abusing opioids and here we are taking as little as possible and we can’t tell them that we cut it up as they hate us playing with dosage and they may reduce our dose and never increase it again.
I would say persevere with Buprenorphine , only take the dose you body requires it has a 24 hr half life so maybe take it late morning instead and see if that solves a few problems.
ProfessorJohn Winkleman recommends early dosing for people who suffer insomnia.
Shumbah! Oh my goodness, my heart aches for you. I’m so glad you have found some peace and better quality of life.
I don’t know that I’ve thought about it directly but your words on dosing and telling our docs couldn’t be more true. I don’t ever want mine to know that I’m taking less because you’re right, it’s a fear of pulling back and never being able to adjust again. I’ve been taking the buprenorphine for 3 years now - I think more than anything I just got used to being tired. I have been working from home since the pandemic and just maintained my practice this way for now mostly because of the fatigue. I know part of the challenge for me and so many of us is actual direction. There are so few educated doctors around this it’s like grasping at straws. Most of the time it seems we are educating them. The trial and error part of RLS is immense anyway but I have learned more and received better medical direction right here. I’ve been able to email Dr. B a few times because I found that instruction here. It’s incredibly humbling to feel so connected to all of you through this forum, I think you all have saved my sanity if not my life in terms of actually being able to thrive again. I try to keep that in perspective with this part. I’m tired, but RLS has been more managed than ever before. I’m frustrated but that’s because I know more and can see actual options and hope through it all where I could not when it was trying to get off of the 20+ years on pramipexole at up to the 3+ mg dosing. All that to say, the note about early dosing is new to me and sparks interest especially as I’m here after not sleeping most of the night from RLS - mostly of my own doing in this blip of trying to dance with low amount prami and buprenorphine to figure out how to win this battle over the fatigue.
I have tried taking bup at different times before to see if that lessened the next day tired and could not tell much difference except that I ended up with breakthrough RLS if I took it before 6pm. If I take it 30 minutes or so before sleep whenever that is but typically 11p, I haven’t had breakthrough issues. I’ve logged all the foods/drinking/meds etc along the way for years trying to find other things that might cause breakthrough but can’t find anything. But part of me is now wondering if it’s just too much in general that is causing problems. I’m going to keep trying to lower the amount I’m taking but I’ll try the early start too. It appears insomnia can be attached to the actual list now.
Sorry for all those words (ha, lack of sleep!😂) but thank you for the info and help and I’m so thrilled you are doing better too!!
Although Bup works for me dose is different most nights, I just take what’s necessary and I am still looking for answers.
When I had sepsis and antibiotics for 5 months I was nearly on NO buprenorphine a couple of nights none.
So of course the question I was left with How can antibiotics help RLS
only the strong ones antibiotics helped.
In answering that question how can anntib help RLS all the research and studies lead me back to the gut.
Example one study said 66 % of RLS ALSO HAD SIBO
I honestly never connected my nightly shortness of breathe , a bad taste in my mouth reflux to being a large contributor to RLS .
Within 6 weeks post antibiotics those symptoms were back.
Any bout of food poisoning can have been the cause of causing any kind of leaky gut and bacteria from childhood to now.
I have learnt so much since the sepsis and I am currently doing a 2 month course of mastic gum powder every 8 hours to kill and kind of bugs from the mouth down.
Then I will add good bacteria
Then I will have a couple of months off if no symptoms I will do another round of treatment starting within 4 months because gut bugs can be difficult to kill.
There are fascinating studies from Red/ blue light therapy , hyperbaric chamber I’m doing these when home.
And some people who have have stemcell therapy for a shoulder and healed their gut by default .
We are booked in for stemcell therapy in Antigua in May so I’m keen to see what happens
There is now research that Parkinson is gut related .
People are getting reversal result from 7 mg patches
Good grief I’m sorry for all that you’ve gone through! I’m so glad you’re feeling better and in a better place for you and your family and truly selfishly for all of us too. (I’m going backwards in reading posts btw so bear with me). I haven’t tried the early morning, it scares me with how tired I feel otherwise but maybe I could try over the weekend. When I have tried taking it earlier in the evening, I find that my limit seems to be 7pm or so. Any earlier and I was getting breakthrough RLS sometime early morning 4am or so. I do not think I tried that when I was taking pregabalin so maybe that would help too. I’ll talk myself into a plan of action for the weekend.
I have been so pleased to get my bup dose down from before though and thank you for your guidance on that. You, Sue snd Jools should be knighted for all you have shared to help the rest of us through this
Hi Erin , I am finding that people even those without RLS are struggling post COVID from fatigue and tiredness because our brains changed during lockdowns and isolating ourselves. In general a lot have become more insular. In Japan there are a million people who do don’t leave there bedrooms and 2 million that leave home once a week out of necessity. My husband is the energiser bunny even he admits to struggling, we used to dine out nightly because I don’t cook now he cooks and we hardly go out even tonight he would normally go to the football he has seasons pass private box and all of them lads stayed home. Even young people in there 30s have told me that they to are struggling and are not back to their pre Covid lifestyle .And then we add having COVID several times. Globally I think there is a massive shift and it is slow to claw our lives back and break the patterns from Covid .Plus we have pre-existing conditions. It’s a lot
You’re wonderful Shumbah, thanks for that. I completely agree on the world changing. It’s so interesting what has happened. I’m a therapist and half of my practice has remained online and could easily be all based on client wants. It’s been a challenge to make the move back to my physical office space but have slowly gotten more time back there because I’ve missed my other therapists. It’s soooo easy to stay home now, no question. Who would have thought we would have to work so hard to make ourselves go bank out in the world and connect physically ??? I’m still covid free so far, I don’t expect that will remain but I’m not worried about what’s out there now. I’ll say it sounds like your household is much like mine these days 😂 - we both cook way more than we used to before covid but at least that means it’s a bit healthier I suppose. Cheers to you, thank you for all of your help and words over the years, your experiences were first hand helpful in getting to buprenorphine and regardless of what’s going on now, I feel pretty strongly that it saved my life. If we can figure that part out, this will come too. 🩷🩷 thank you!!
Hello - I’m new - I visited this forum sometimes, and find it very comforting and helpful to know that I’m not alone! I take buprenorphine since end of May 2023, 2 ½ months now , so I can report some experience with it that seems to mesh with the side effect of groggyness experienced by Erinjee, and also, I have a question about it.
I don’t so much suffer from classic RLS than from the closely related PLMD / Periodic Limb Movement Disorder - that is, I’m relatively symptom-free in daytime and evenings unless I’m extremely tired and trying hard to stay awake. My problems start only when actually falling asleep, with rhythmic twitches of (mainly) feet/legs every few seconds and simultaneous rises in heartrate, hell on earth. Since it’s my first post I’ll first summarize what lead up to buprenorphine. I live in Germany so please bear with my English🙂
I avoided taking medication for years but finally had to because I was down to zero sleep. I was prescribed ropinirole, then first-line treatment. I always tried hard to keep the dose at a minimum, but of course augmentation happened. 3mg worked tolerably for several years. - I was an insomniac even before I developed PLMD, and ropinirole did nothing to alleviate the insomnia, but at least I got a few hours of sleep most nights because it controlled the PLMD. Four years ago my neurologist tried to get me on pregabaline. I tried increasing and ultimately really high doses over 3 months, but was totally wonky during daytime. It wouldn’t have been safe to drive a car, and working was just about possible. The side effects didn’t diminish over time, and at the same time, I could not reduce the ropinirole one bit. So gave up on pregabaline and stayed with ropinirole. Next, rotigotine patch = extreme skin issues. Next, I was prescribed cannabis extract, hoping I could reduce/get rid of ropinirole. I slept a bit better, but the extract did neither reduce limb movement nor enable me to reduce ropinirole, so gave that up, too. Finally, I needed 4mg ropinirole nightly. The idea of harming myself further with every single dose was so repulsive I could hardly swallow the tablets at night.
After I read about buprenorphine here in this forum I decided to try it. So one main goal was to get rid of ropinirole. In Germany there is now one opioid officially available for off-label use in RLS, and that is oxycodin+naloxone. After I read about it both here, other web sites and in research articles, I knew I did not want that. I’m a health professional myself, and discussed the options intensely with a psychiatrist friend/colleague who headed a clinic for addiction disorders for decades, and she too strongly favoured Bup over oxycodone with or without naloxone.
The first night on 1mg buprenorphine I could feel respiration slowing down a LOT, I had vertigo, nausea and I lost my morning coffee - obviously the dose was much too high, and over the next days I reduced it to about 0.25mg by splitting up the tablets. At the same time. I reduced the ropinirole over three weeks (also cutting the tablets in smaller and smaller bits) and was rid of it after 21 days. About this, I am extremely happy!
Now, here is my buprenorphine situation after 9 ½ weeks: a crumb of 0.25mg controls the limb movements 99%. Good!
Two big PLUSSES compared to ropinirole: 1) I sleep much better at night 2) I can actually nap during daytime because of Bup's long half-life. With ropinirole that was not possible, because hell-on-earth started with nodding off at any hour.
Sadly, there are also two big MINUSSES: 1) The naps would be great if they weren't a MUST. I HAVE to nap during daytime, because like Erinjee, I get extremely tired on almost all days, sometimes even before noon. I'm reasonably alert many days - but not all - from rising to about four hours later. Then it's steep downhill. These daytime naps have no refreshening effect . In the evenings I sometimes crash as early as 7PM – I’m totally not able to stay up any longer.
This very strong tiredness and lethargy make both work and social life VERY difficult. Not something that can continue indefinitely. 2) the dosage is a bit hit-and-miss: because cutting the 2mg-tablet, even with a tablet cutter, is not very accurate. So, 0,2mg tablets are also available. But the 0,2mg is not consistently and sufficiently effective. 0,25mg appears to be the minimum dose that really kills the limb movements. Unfortunately with the said side effects of extreme daytime tiredness and lethargy. I also feel that the intensity of side effects with this rather low dose of 0,25mg is pretty much the same as when I took higher doses. Which also goes for other - to me minor - side effects like constipation.
So here is my question: Shumbah (Shumbah, your posts made me go to buprenorphine - thanks to them I got rid of ropinirole! I'm really grateful to you! 🙏) writes “it is not unusual to be tired for first 6 months on Bup“. But it seems to me a long time for side effects to diminish, I have not heard this about any other psychoactive medication. I would love to know whether someone here has in fact experienced a diminishing of tiredness after five to seven months. Your experiences would help me developing a perspective on Bup.
erinjee, hi - I wrote a reply, lengthy, because it was my first post. So maybe my question got lost in the verbiage. I would really appreciate your input - your original post was 3 months ago - has your fatigue due to buprenorphine diminished by now? Any change?
Anyone else out there who can share their experience after 5 to 6 months with daytime fatigue due to Bup? Someone wrote that improvement may happen after 6 months, which seems long to me. Thanks!
Hey, sorry… No it has not gotten any better just with time. My last post you are talking about was in search of direction and I got some helpful feedback about the dose. At the time I was taking 2mg sublingual and have since gotten it down to roughly .5 quarter of a pill, but like you said it’s all a matter of crunching it up. In the process of that I have added pregablin and now also take 225mg a night of that. Overall I could tell I was less tired when I came down on the amount of buprenorphine itself but still remain tired all day…and yes to naps. It’s almost impossible to go without. But I am always still scared to go to sleep at night. (1am here-should have been asleep hours ago). I’ve been taking buprenorphine for 3 years now I think. Like you said, it’s a blessing to be off of the nightmare DA but tired is still tired is still exhausted. I wish I could report better information.
Hi - thanks for the reply. Similar here. I take 4mcg sublingual, almost 10 months now. Tiredness got a bit better, but not much. The improvement in sleep vis-a-vis the ropinirole hasn't lasted either. It seems the buprenorphine keeps me awake too, now. The better sleep was only in the beginning. Daytime naps would be much needed, but not possible always, because sometimes the PLMD breaks through, and sometimes, well, I just can't nap. It seems, too, that the 4mcg currently aren't enough. I hope I don't have to up the dose. Me too I'm scared to go to bed at night. Scared of PLMD , and even when there's no PLMD I'm scared of not sleeping because the Bup keeps me awake. Weill.... maybe someday someone comes along with a better solution.... I'm trying Ashwaganda powder now. A sort of Indian Ginseng. Hoping it'll give me some daytime energy and better sleep, but so far, no difference.
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buprenorphine for RLS 
