Hello everyone, I had been on Oxy for the past couple of years for pain. Recently I switched pain doctors and he switched the Oxy to Buprenorphine 8mg (film).
The Buprenorphine, like a miracle, stopped my RLS immediately and it also controlled my pain so much better than the Oxy. In the past couple of weeks, I have been to the ER four times because of Respiratory Depression. They attributed the RD to anxiety, even though the RD started first and then anxiety kicked in (a pretty normal reaction, I would think).
I was at my wits end because Respiratory Depression is a nightmare. I would spend the entire night gasping for air waiting for the morning to go the ER, because the night shift at the ER has proven to be incompetent when I've been there. The gasping for air made me extremely anxious and suicidal. All I could think about is that the only way to end this horrible nightmare was to off myself. The hours dragged on. I couldn't sit, had to keep walking back and forth. Kept busy trying to do things around the house. By the time I woke my husband to take me to the ER, I was in a state of panic. They gave me Alprazolam which calmed me down. I asked why this was happening to me and this said that it was anxiety. Even though the anxiety followed the RD, go figure.
I am taking several other medications for blood pressure, anxiety and depression. My doctors have no clue as to how serious drug interactions can be. I decided to figure things out myself. I went to Drugs.com and did an interaction checker, and almost all of my medications had a major interaction with Buprenorphine. (Perhaps at a lower dose I would not have gone through this nightmare, or if I was younger). I separated my medications and have been taking them a few hours apart and so far, so good. My pain doctor also reduced the Buprenorphine to 4mg.
Buprenorphine has been a miracle for me. After not suffering from RLS since on Buprenorphine, I don't know if I could handle it if it started up again. I thank you God and I thank you Shamba.
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Then explain why I have RLS Eryl. I don't eat any sugar or processed foods. I follow a strict MS anti inflammation diet.Josanna's RLS may be caused by kidney disease, low iron or spinal cord damage.
It would be less triggering if you suggested a trial of anti inflammatory diet to Posters, rather than tell them their RLS is definitely caused by their diet.
Joolsg, now that you mentioned spinal cord damage I'm wondering if my back problems might have something to do with my RLS. I have Scoliosis and I was supposed to go through two surgeries one after the other. I asked the surgeon if I could try the first one and see if it helped and do the second one later, he agreed. I don't know exactly what he did but it looks like separators screwed on between four vertebras in the lower back. The next surgery would entail a rod up and down my spine. I am doing fine, which is why I have not gone for the second surgery. I have to wear knee braces at night and the back pain is minimal. If I was certain that the back surgery would eliminate the RLS, I would jump at the surgery.
I finally went through my spinal surgery for Scoliosis 3 weeks ago after canceling two times. The pain got so severe that I had to do it. They put two rods clear down my spine.
I had not had RLS since I started Buprenorphine and it started up again after my surgery (very mild). They put me on Hydrocodone for the pain, but I added 2mg of Buprenorphine at night, hasn't really helped. I am hoping that the changes in my spine are giving me temporary RLS. Doctor said that I have been walking crooked all my life (75 years) and that there will be a lot of changes and pain for at least 6 months.
I hope you are doing well. I haven't posted for some time because of the pain I was going through.
I empathise, your experience sounds horrible. I'm so glad things have eased.Are you aware that many medications for anxiety and depression can worsen RLS? Are you on an RLS friendly drug?
The new ones are Omeprazole and Hydroxyzine. I want to get off of the Buspirone and try the Hydroxyzine. I am so sensitive to medication, I guess because of my age. Thanks, Sue, for your help. I hope you are doing well.
Omeprazole should be OK although a few people said it made their RLS worse. It can interfere with the absorption of iron so if you are taking iron take iron and omeprazole far apart from each other. Hydroxyzine is known to make RLS worse for many people. If you tell me what are you taking it for I may be able to give you a safe substitute. Buspirone is safe so it is a shame it isn't helping you or you are sensitive to it.
I had terrifying respiratory depression on oxycodone it was not nightly and of course I was usually in a foreign county so not so easy to seek help amend I inew at that time they would take away the only tool I had. The oxy was slow release and when it would kick in I would consciously have to breathe in and out hence if I dosed off I could not breathe at all . God what a vile time that was , I remembered being Rome I was in a very desperate state from the RLS and the treatments the pain was horrific .
Buprenorphine is a life saver for most people my heart breaks for people allergic to opioids however if it was me knowing what I know as long as a person was in a controlled environment I would still try the Buprenorphine because it works very differently to other opioids.
I do find it interesting who most GPS , surgeons, specialists and anesthetiser have no knowledge about buprenorphine and how it works and most of all it’s safety profile .
I am so pleased you now have relief and like you I most certainly could not go back to life before buprenorphine.
Hello Shumbah, I am so sorry about your experience, I can so empathize with you. I switched pain doctors and my new one put me on Burenorphine 8mn film three times a day. ( I have never taken it three times a day, only twice a day. I cannot stand the anxiety. It is in the pit of my stomach and I have to control myself from running and screaming. I am going to reduce it to 4mg and possible 2mg if this is what is causing the anxiety. (probably because of the high dose). It sure handled my RLS, thank God and you for that.
I hope you are doing well. How is your back, by the way?
How is your reducing dose going , 3 times a day seems weird . Does it have 24 hr coversage is it Subutex sublingual ?
I only know 2 people on 8 mg Buprenorphine and they need it to control their RLS , 2 mg and under is the most common dose.
I would hoard any excess you have safely and do not tell your doctor be use there can be times of difficulty get your script , shortage , change doctor , or pharmacy so many reasons.
I have been kicked around for a week at a time multiple times luckily I had a stash. I kep enough should it ever be banned totally that I have enough to get me to Switzerland for assisted dying . I would not , could not go back to suffering from this vile disease.
I’m afraid my back is not good I need a triple fusion however both surgeons opinion are my bones are not strong enough to support the hardware. My only hope his stem cell therapy $90,000 no guarantees we are just waiting for the exchange rate AUS to US to be in our favour then we will off to UTAH . I have everything crossed 🤞
I had four levels on my lower back fused, I guess. They put like plastic discs with screws. Don't quite know the name of the procedure. Anyway, the following day the surgeon was to put a rod through 10 levels. I asked if I could try just this one procedure and see how I do. So far I have been doing ok without the second surgery.
you poor darling , gosh my heart goes out to you .2 of my daughters have had fusions one a single level it was successful the second daughter was a double level and it has been dreadful nd not overly successful.
I myself need a triple level fusion however 2 surgeons have said my bones are not strong enough to hold the fusion so like RLS I have had to fund another way .
I know that 80 percent of people who need fusion have no pain and don’t know that their backs are gone.So I thought I need to come at it from the nerves because that causes the pain.
This is to lengthy to go into to much depth on how I came across these treatments that give quality of life.
I bought ampules of Zeel and Traumeel online and I have a nurse friend who was prepared to take the risk and inject it into all my areas of pain which was from my scull through to sciatic nerves and it is a one of my miracles as it shrinks the nerves and sends them to sleep . I had this treatment first in NYC for Morton’s neuroma in my foot. I’m giving you an overview.
Also every quarter I have Xiomin injected to all those areas it is similar to Botox but different and has no rebound protein like Botox.
Xiomin has a massive part to play especially for my sciatic nerves .
So with both those treatments mostly I am pretty good I no longer use pain creams or tens machines or pain killer
The pain I get now is if I am on m feet all day painting and I truly over do it my back compresses and I’m straight into my electric bed into Zero G position and electric blanket on super high and that takes some time but gives my tremendous relief,
As I mentioned my daughter still suffers can’t walk upstairs because her leg won’t . Her only pain saviour now is the bed in zero g and electric blanket she said Ashe would not have got through without the Buprenorphine patches, my daughter surgery was just over 12 months ago.
I would like to try my injection treatments on my daughter however she lives to far away from the city and it’s not easy for her to travel.
Depending on where you live, if Botox is an option through neurologist for pain I would as for Xiomin instead I have found it a lot more superior to Botox and it is last a lot longer and can be used in areas that Botox can’t be used.
I am currently working on getting to USA for Stemcell therapy for my back, there is no guarantees, they said they are hopefully because I am getting such good success from my treatments.
Buprenorphine patch and CBD oil / THC oil would be my go to if I was in your very unfortunate situation.
Sadly my daughter were both in their late 20 s when they have had to go through this. So there will be more complications with age so I guess I have to go through it to find the answers so I can help them .
I am so sorry you have had to go through this procedure.
Hello Shumbah, I was wondering if you have heard about a Radiofrequency Ablation? I had one on my neck 10 years ago after having gone through two cervical surgeries and I have not had pain on my neck since then. Radiofrequency ablation (RFA), also called radiofrequency neurotomy, uses radio waves to create a current that heats a small area of nerve tissue. The heat destroys that area of the nerve, stopping it from sending pain signals to your brain. RFA can provide lasting relief for people with chronic pain, especially in the lower back, neck and arthritic joints.
I am scheduled for an Ablation on my low back. They first inject lignocaine to make sure they have the right nerve. Once the lignocaine is injected, if in the right spot will give immediate pain relief.
Secondly, I asked my pain doctor if I could switch to Buprenorphine, which has 2mg of Naloxone in it, and he said that I could not take it with Hydrocodone. I understand that I don't need the Naloxone only the Buprenorphine for RLS. I don't know if the Buprenorphine alone would interfere with the Hydrocodone, and if it doesn't I need to know how to present this to him. Do you know where I can get info for him? Secondly, do you know how I could get in contact with Dr. Buchfuhrer?
Yes I have seen good and bad results with nerve ablation
Both my daughter have had spinal fusions.
Ive not had contact with Dr B
Dr Glen Brooks would be your best bet for info on why not to use naloxone as he is an Anesthetist Naloxone blocks opioids no good if you need emergency
He is the reason we all take buprenorphine
Remember to thank him he has saved so many lives . I would start what a thank you at how it’s changed your life then ask your question about naloxone
Sorry I am assuming you are taking it and it’s working , hard to keep everyone’s journey in my head.
Hello Shumbah, I got a response from Glen Brooks and he suggested taking Buprenorphine without the Naloxone three times a day. 1mg am, 1mg day and 2mg evening. Do you thing this would be enough to help with the pain which is not being controlled at all by Hydrocodone.
Also, what experiences do you know about an Ablation?
I'm so sorry you had such a traumatic experience on Buprenorphine. 8mg is a very high dose. The average for RLS is around 1.5mg. Reducing it is a good idea. Find out what the lowest dose is that will cover your RLS.Buprenorphine does cause anxiety/panic attacks in many people. It happened to me after 4 weeks but I was expecting it to happen as I'm clearly very sensitive to opioids. It happened to me with Oxycontin and Kratom. Dr Buchfuhrer had advised me to add a small dose of pregabalin because it is sedating. He was right.
As you're on so many other medications, discuss adding a small dose of pregabalin. It may completely resolve the anxiety. And try to manage on 2mg of Buprenorphine if possible. I think it would cover your RLS still but might reduce the anxiety.
Hopefully, now your RLS is controlled, and you are sleeping well, you may find your other health conditions improve.
I am on 300 mg of Gabapentin twice a day. My doc said that I could just quit and again ended up at ER. I was taking 1200 mg restarted at 300 mg twice a day. How do I switch to Pregablin? I am definitely gunshy with everything I’ve been through.
You can switch directly. 300 mg of gabapentin is equivalent to 50 mg of pregabalin. However if you don't have symptoms in the daytime, take it all 1 to 2 hours before bedtime. If you take calcium even in a multivitamin don't take it within 2 hours.
Hi Sue, I wrote to Dr. Glen Brooks and he suggested that I take: Buprenorphine without the naloxone: 1 mg in am, 1mg at noon and 2mg at night. He said that should take care of the pain and RLS. If I do the switch from Gabapentin to Pregabalin should I take 100 mg of Pregabalin since I am taking 600 mg of Gabapentin or would 50 mg be sufficient.
Sorry about that -I missed the fact you were taking 300 mg twice a day. I would switch to 100 mg pregabalin although if you need it twice a day then 50 mg twice a day. I am confused though as to why he would recommend you take buprenorphine 3 times a day as it lasts for 24 hours.
Tegarding theBuprenorphine, doc reduced to 4mg 3 x day. I have been doing 4mg once daily. So far so good for RLS and pain, but I still have the anxiety in the pit of my stomach. Drives me crazy.
Joolsg, My pain doctor switched me to Hydrocodone (3 x day)and my RLS has returned. I was on Buprenorphine and Nalaxone (4mg/2mg). (Sublingual Film) I asked if I could take 2mg of Buprenorphine at night for the RLS and Hydro 2x day. He said no. I understand that the Nalaxone is not necessary for RLS. I need to try to sell him to give me 2mg of Buprenorphine (no Nalaxone) for the RLS. If you have any ideas, I would certainly appreciate your suggestions.. I pray you are doing as well as can be expected and thank you so much for your care and concern for others.
There is no point taking any other opioid with buprenorphine as bup knocks the other opioid off the receptors. That's why it's used to help drug addicts get off heroin.
Why has your doctor stopped a treatment that clearly works for one that clearly doesn't?
Please refer your doctor to the mayo algorithm, the massachussetts opioid study and dr berkowski's website. All make clear that Buprenorphine is very effective for refractory RLS. You may need to see another doctor if this one refuses to continue your buprenorphine. I hope he listens to evidence and reason.
Hi Josana,I've just seen why your doctor reduced the Buprenorphine. You were on a very high dose and experienced respiratory depression.
I see that Lotte and ID suggested reducing the dose down to 2mg.
Buprenorphine usually has a lower risk of respiratory depression than other opioids but combining it with pregabalin/gabapentin can worsen the problems.
You should ask for a FULL review to consider all your meds and your overall health.
If you have respiratory depression, have your doctors considered a CPAP machine?
They will advise you how to reduce breathing issues and consider all the meds you are taking.
If you're on gabapentin for anxiety, they might replace that with an RLS safe alternative.
That's interesting. Sadly, if Buprenorphine was causing respiratory depression despite the CPAP, then you have to take your physician's advice.That is very sad, as Buprenorphine usually has the least risk of respiratory depression.
Hi again Joolsg, I reread what you said about taking a small dose of Pregabalin for anxiety. I am currently taking 600 mg of Gabapentin. I wonder if I took it in the am if it would help or if I should switch back to Pregabalin (I keep switching back and forth) I hate this anxiety. Taking a toll on me.
If 600mg hasn't helped your anxiety, I'm not sure switching to pregabalin would help either. For me, pregabalin stopped the opioid induced panic attacks straight away. I take 25mg pregabalin just before bed and it stopped the daytime panic attacks.
Did you only get anxiety after you started buprenorhine? if you have always had anxiety, you would have to discuss with your doctor to see if there is another option. Most anti anxiety meds trigger RLS, so take that into consideration.
SueJohnson, I take 300mg Gaba in am and 300mg Gaba in pm. Should I still take the Gaba in the norning and the Pregablin in the evening, or eliminate the Gaba all together.
You can stop the gabapentin entirely. Unless you have symptoms during the day, you can take 100 mg of the pregabalin in the evening or if you do split it and take 50 mg in the AM and 50 mg in the evening.
Josana, I know you took the oxycodon mainly for pain, thus I assume the buprenorphine is also mainly for the pain.
As others said, opioids can cause respiratory depression, although the chances are lower - but not nill! - on buprenorphine. Have you considered lowering your dose? 8mg is quite high, certainly for RLS. Lowering may reduce the breathing depression. It is always important to find your lowest effective dose.
According to this table pain.ucsf.edu/opioid-analge... buprenorphine is 20 times stronger than oxycodone. Thus, according to this table, 8 mg buprenorphine is similar to 160mg oxycodon. Were you taking that much? Strength of buprenorphine seems difficult to assess; I have also seen tables that list a morphine equivalent of 60 for buprenorphine, which translates to 40 times stronger than oxycodone! Anyway, hence my lowering suggestion.
Hello LotteM, I lowered the Buprenorphine to 4mg, just in the a.m. (scared to try it at bedtime). If that works, hoping to lower it to 2mg. Thank you so much. It is a relief to know that Buprenorphine is the culprit. I was going crazy trying to figure out what was going on since I never had this problem while on Oxy. Have a blessed day and I appreciate you much.
Hi LotteM, I went down to 4mg of the Buprenorphine and then 2mg. The 2mg didn't seem to be enough to help my pain, so I went back to 4mg. once a day.
I plugged in all my meds into drugs.com to check counter interactions. There was some major ones which caused my Respiratory Depression and Panic. I assigned different times for each one. I have the HERO machine, so I just put them in there and they are dispensed at the correct time. Thank you so much for your concern. Anything I can do for you, I am here.
Hi Josana, thanks for the update. Has the lowered amount of buprenorphine reduced your side effects? I hope so!
If the drop from 4 mg to 2 mg was too much, have you considered reducing in smaller amounts? If it is not a slow-release tablet, you can half or quarter tablets to reduce more slowly. In view of side effects, it ia always best to find your personal lowest effective dose. If you do so, give yourself some time (several days to a week) to adjust to the dose reduction, before you decide whether the reduced dose suffices to control your symptoms or not.
it is more so Temgesic form of buprenorphine it is more acidic people are taking multiple tablets a day or at a time and not breaking them up as per my instructions
Subutex version is better as much less is required It should always be broken into tiny splinters and pop a little splinter under tongue at a time it is absorbed in seconds with zero residue. I have been doing this since night one nearly 4 years ago zero teeth issue.
He also owns a Ketamine clinic dealing with major mental trauma
It was an absolute miracle that I found Dr Glen Brooks and that he responded to me email which I asked would Ketamine infusion help RLS . I was in hospital and had said good bye to my husband and I was about to tell my 5 children that I was going to Switzerland for assisted dying .
So it is incredible to think he saved not only my life but hundreds of people now . He is a genuine kind man .
Shumbah, how can I contact Dr. Glen Brooks so I could get info from him for my pain doctor. Info that it is safe to take Buprenorphine with Hydrocodone
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Oxycontin and RLS = addiction?
Query re changing from Oxycodone liquid to Buprenorphine to curb RLS
RLS
