I transitioned successfully from 700 mg lyrica/2 mg clonazepam, to 10mg methadone/ .5mg clonazepam - and for 2 months now I am mostly symptom free. This is the really good news. I sleep solid 8 hour/nights. At a glance, 10mg meth .5mg clom. are a great combo. I mostly feel like my old self again. Memory is much sharper and I have gotten rid of all the other lyrica side effects: daytime exhaustion, fuzzy thinking, inability to find words, strange gait, etc..
And, I am having a hard time coping with three side effects that started with the new clon/meth regime: I feel sleepy when driving any distance (goes away as soon as I stop driving or am passenger); pretty heavy depression and heavy sweating.
Anyone have similar reactions and if so, what can I do ? The depression especially, as I do not want to add more chemicals to my current regime with anti depressants. I am working out 45 minutes 5 times/week, hiking almost daily, eating healthy (although my appetite also disappeared sadly). I am concerned about eliminating the clonazepam as methadone alone causes some insomnia and low level anxiety….
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Did you reduce the 700mg of Lyrica very slowly, or did you make a straight swap?Methadone is known to cause depression but it may be the withdrawal from the Lyrica that has triggered it.
I spent 9 months reducing from 150mg of Lyrica because I had read that rapid withdrawal caused depression, anxiety etc.
The sweats are common with Methadone. I developed them on Buprenorphine and have found taking a daily, non sedating anti histamine reduces them by around 60%.
I assume you're in the US, as Methadone has not been prescribed to anyone here yet.
I can only suggest waiting a while to see if the depression settles. I know Dr. Buchfuhrer suggests adding a small dose of wellbutrin when Methadone and Buprenorphine cause depression but I would wait a while to see if it settles.
I transitioned off over a couple weeks and had only been on lyrica for 3 months. Perhaps I should have gone slower? I was following my doc’s instructions and he did not mention risk of depression.
This whole year I have been transitioning off 6mg of ropinerol which I had been taking for 6 years with strong augmentation. What a monster of a drug to get away from!
Yes, I am in the US. I will ask my doc for a non sedating anti histamine for the sweats. He does know about the depression. But hasn’t offered up any suggestions yet. I will be patient a while longer regarding the depression. It is horrible wandering through life without a feeling of joy or happiness. Some days I wonder whether my dopamine receptors were permanently damaged by the ropinerol.
Sadly not. Hopefully if they ever do detailed research on RLS and how dopamine agonists affected our receptors, we may get answers.I suspect you may start to feel a little better in a month or two. Your brain has been on a rollercoaster this year. Getting off high dose Ropinirole is extremely traumatic. I'm known as an extremely positive person, never get down etc but going through augmentation and withdrawal left me suicidal. So allow your body and brain to settle and get used to the plummet in chemicals- first Ropinirole, then pregabalin at a VERY high dose. 700mg is over 5 times the average dose for RLS and you dropped it over weeks. The chemical imbalance in your brain will take weeks to settle.
You are doing everything else right, so hopefully the daytime tiredness and depression will disappear. I developed panic attacks on Buprenorphine ( happens every time I start opioids) so I added a small doe of pregabalin (50mg) for 3 weeks and then stopped. The panic attacks had gone/settled.
Today I was inspired to gather all the extra pills I am no longer taking, from this year’s med. experiments - and will hand these over to my pharmacy for them to dispose of. And in doing so, I NOTICED my lyrica dosage is wrong below. I was taking 400mg, not 700.
Thanks for sharing your traumatic experiences which sound very similar to mine and suggestions on ways to deal with things. My hubby is quite worried about my depression and suggested I see a therapist. I am trying to explain to him that this is chemical in nature and therapy will likely not solve the problem. Hopefully, as you suggest, time to heal from all this change will take care of depression.
I am also hoping I can get to a lower dosage of the clonazepam or off completely but will wait a couple months, which is what my doc is encouraging me to do.
He unfortunately also had me do a sleep study in early Sept. and diagnosed mild sleep apnea which runs more sever during REM. He then had me start on a CPAP hoping this would help my RLS as well. He was also concerned about the combo meth. and sleep apnea could increase risk of respiratory depression. My reaction to the CPAP was immediate and extreme claustrophobia. Which added anxiety to my depressive feelings. I have just written my doctor that I am returning the CPAP, as I am no longer waking up at night with RLS symptoms and sleeping 8 hours.
Like you I am normally a very positive and high energy person, so all of this is so foreign to me. The CPAP response was strange too, as I am an advanced certified scuba diver and have never experienced problems wearing a mask under water.
Any experience with possible impact of sleep apnea on RLS? Do I need to pursue this further?
I'd keep an eye on the breathing as opioids do cause respiratory depression & the CPAP machine might help. Although they've said it's mild and the methadone is very low dose. I Understand about the claustrophobia though. I don't think I have sleep apnoea.
Ouuu, you’re a scuba diver. I’m so jealous. My religion prohibits that. Well this is gonna sound strange, as most of my posts do, but try to enjoy your temporary depression.
I’ll explain. About 15 years ago I started having panic attacks. I know what triggered them, but that’s irrelevant. I HAD to have them. And panic is so inaccurate a term in my case. I was “taken.” That’s the only way to describe it. I would try to speak, but no sounds would come out. I was paralyzed. I found ice cold water on my wrists would turn the tide or very carefully applying eyeliner, but that’s not important either. A friend of mine, who is a depth psychologist, told me to please just try to step back and look at myself from a distance. “Just try” she said. That may have helped a little. Plus, I liked that when the panic passed I had a slight sense of bliss. Each attack took a year off my life, but that bliss was quite nice.
Then I read about “the Dark Night of The Soul” and that we MUST have these harrowing experiences if we are to become warriors and pass this wisdom on to subsequent generations. A right of passage that continues through-out our lives. The book I read stated that these “occurrences” are actually our spirit guide in disguise forcing us to awaken, to look around, to teach us lessons. After reading this I forced myself to greet my spirit guide as the panic arose and to ask him what lessons he was bringing for me today. As you can imagine, it’s pretty hard to have a panic attack when you’re engaging in a full blown conversation with your spirit guide. Needless to say I must have learned my lessons because my spirit guide has not returned, in that form, again. I miss that subsequent bliss.
Not long after that my son had a panic attack at Boy Scout over-night camp. We actually went to visit him a day or two later and he mostly wanted to tell his father about it. I’m like “why are you talking to him about it, he’s never had a panic attack in his life.” I told him I’m Miss Panic. Fast forward a year and he’s packing to go to camp (my kid’s got grit) and I tell him he doesn’t have to go. He said he does, but that he could feel the anxiety rising. I had to beg him, but he allowed me to read some passages from the book. He understood that the panic was a must, that it truly was the only path to becoming a warrior. A few nights later he texted me - no panic. Kind of a shame that he didn’t have one more. I assured him more dark nights were headed his way, but that he would get through them.
The Native Americans of old taught their children about these dark nights and how it is just their spirit guide. And if their kid wasn’t sufficiently traumatized by age 13 they would put them alone on a mountain for 3 days without food or water. If they survived they got an eagle feather and were considered a man by the tribe at that point. In my religion we make our kids learn Hebrew (though they have no idea what the words mean) then we throw them a big party and they are deemed a man at this point. Silly religion. I told my kid he didn’t have to. So then naturally he wanted to. The point is, because of my experience I was able to pass on the super secret info. We should all be teaching our kids, starting at age 5, about all of the unbelievably horrendous things that are headed their way - anxiety, depression, unrelenting despair, but that in the end they will get an eagle feather and be a warrior and truly be in awe of the human spirit - the collective human spirit. I would have it no other way, personally.
So I tell you now Ms. Deb, do not waste this opportunity to meet and greet your spirit guide. It doesn’t matter what gave rise to this temporary state, you must elevate it to the spiritual realm. That CPAP is likely your spirit guide as well, but by now I’m sure you think I’m just plain insane. Good night and please say hello for me.
You are suggesting I lean into it all and trust I will end up somewhere better for it all. With wide open eyes, I will. As I cannot stay happily in this temporary state.
Not exactly. I tried to take a step back and observe what was happening to me from a distance as suggested by a psychologist friend. I looked to books and found “Dancing the Dream” by Jamie Sams. That’s when I realized that “panic” is just a word - a name given to a human body condition. I also realized that I was being urged to grow, to change direction, in however modest a way. I personified the panic. I greeted it and asked what are you showing me. It was too late, the cat was out of the bag. I found it impossible to “panic” any longer.
Not all conditions or things that happen to us are our “spirit guides.” I don’t think. Supposedly our souls do come here for “soul schooling.” I’m quoting Eben Alexander Jr. A neurosurgeon who had a near death experience. My spirit guide led me from an overly grounded, overly-diseased physical life to one of awe and understanding. I read the writings of many of the great mystics. I attended lectures put on by the International Association of Near Death Experience. Life is way more complex (spiritually speaking) and mysterious than is presented to us in our educational institutions and the Old Testament. I recommend reading Heaven is Beautiful by Peter Panagore.
So no, I don’t recommend leaning into it. The depression is an earthly manifestation that is actually a wake-up call. Instead look at it as you would a directional sign. If you are like me, once you embrace it as a guide, you will find it increasingly hard for it to swallow you up, to “take” you, as the panic did me. I now consider the panic an old friend. Every once and a while he will pay a visit, but I immediately recognize him and I greet him and look around to try to discern the message.
My spirit guide took a different form recently. It was a year of intense despair before I recognized him and because I refused to acknowledge his presence it almost led to the break-up of my small family. In 2020 I discovered my son is a Trump supporter. I do not say that in jest. I consider that tantamount to supporting Nazism. My hatred for trump and what he represented ran so deep. In the three years leading up to 2020 I spent way too much time on opposing him and ignoring my family. I saw the same evil in him and his supporters as I did Hitler. I lost so many family members to the Holocaust that I felt it my duty. I can almost hear my spirit guide now. “You fool, do you really believe that evil resides in one person, place or thing.” It took my son voting for trump and a year of unfathomable despair (compliments of my spirit guide) for me to recognize and accept that here on earth we are all broken.
Maybe you could consider seeing a therapist with your husband. It may not be only that he is concerned for you but he may be feeling helpless as well on how to help. It couldn't hurt to try it out and see how it goes. Best of luck. I deal with depression and it wears on you.
Sorry to hear of the side effects you're experiencing on the new combination but congrats on being able to reduce the Lyrica/ clonaz. Is it the methadone/ clonaz combo that's causing depression or the methadone do you think?
I know if I take more than 0.5mg clonaz it starts to affect my mood and I feel flat.
But I note you have reduced the clonaz significantly...
Beyond what Jools has suggested, hopefully others here may have further suggestions for you.
On a separate note, can I ask what the daytime exhaustion from Lyrica felt like for you?
I am not sure what is causing the depression. Perhaps the combo?
It could also be that I have been moving alot of chemistry through my body this year. I started the first 6 months of this year transitioning off 6mg Ropinerol/Zolpidem. First tried to move to Tramadol which did not work at all for me after a couple months. There might have been another med after that, however I took poor notes.
Then I managed to switch doctors and get onto my current neurologist's calendar. He has poor bedside manner but is an RLS sleep expert with pulmonary training. He helped me transition to Lyrica /clonaz, which had terrible side effects but better than Ropinerol/zolp or Tramadol and finally got me off all those monsters. He then moved me slowly to Methadone/clonaz two months ago.
I am now taking .5mg clonaz, down from 1mg before. And would love to get off it altogether if methadone-induced insomnia wasn’t the threat.
Lyrica was horrible. My friends and family kept asking me:’where is the Deb we love?’ My memory was totally shot, couldn’t remember every day words like glass, table. I was jittery and stumbled over sentences. My brain was fuzzy and the exhaustion was more like a constant languor. I had a hard time problem solving. These side effects were particularly gruesome because this year I was still working in very high stress career. And I had to find all kinds of support mechanism/tools to appear professional and handle my clients' needs effectively.
Thanks for your reply. I'm on 300mg Lyrica (7+ years) and have the typical side effects. All better than not sleeping! I also experience wakefulness on opioids, and I have tried 4 types (not methadone however).We are all different, but to me 5mg seems like a high dose of clonaz. I know of several people who maintain they feel very depressed on it and can't take it. As I said, a low dose for me (0.5mg) is fine.
I know one or two on this forum have said their opioid induced wakefulness reduced over time, however for others it persisted.
You are going through a really hard time and I feel for you. I’m responding because like Jools (and many others in here) I’ve been through something similar and just wanted to say that I think you are managing your situation optimally and should be very proud of yourself. You are almost certainly correct that it’s all the changes to your drug regime over a comparatively short period of time that is inducing depression.
It’s difficult finding an optimal treatment regime post augmentation and typically it takes quite a bit of trial and error and tweaking to get the best system. You are rightly focusing on this and using the recommended non-pharmaceutical methods to manage the depression. Your natural exuberance will re-emerge when you get a regime that works but while you are establishing that don’t expect too much of yourself. You will look back at this time and feel amazed and proud that you got yourself through it in one piece.
Opioid induced central sleep apnea can be serious and it’s definitely worth working with your consultant to manage this. It is very unfortunate that you find the cpap so troublesome. I started taking Kratom to treat my rls because opioids caused central sleep apnea and profound nocturnal alerting. I don’t seem to get the apnea so badly with Kratom. Unfortunately, it is completely unregulated which is a significant down-side to Kratom.
Thank you involuntarydancer, your kind words help more than you can know. As well as your warning.
It is easy to ignore what you don't want to deal with, especially when one is otherwise healthy. The sleep apnea was diagnosed before I started on Methadone and was still on lyrica/clonaz. As such, I do not have any data showing the impact of my transition to methadone at this point. My husband says I have stopped snoring since this transition, for whatever that is worth.
I have a follow up with my neurologist early January, so we will see what he thinks of my quitting the CPAP...
Hi Steino. So sorry to hear of your difficulties dear. All I would add to the above is - maybe the clonazepam isn't the problem. Everyone is different, of course. But I have used higher and lower dosages of Clonazepam and had no negative side effects. I also have had no problem weaning - up or down, but then again, I always do that really slowly. If it were me, I would wean off the Meth and see how it goes with just the benzo. Maybe increase it? I hear people talking about horror stories with benzos, so I believe they are problematic for some. But nobody in my family has ever had any problem with them. We've been good as gold. God bless and good luck! You will get through this!
I know people with severe Bipolar they do not sleep , my ex was one had from birth never slept poor guy.He was on the first 13 people to try epilum many many years ago.
The doctor said that if it worked he would sleep for 6 months minimum.
He said the body demands pay back from not sleeping.
He was right luckily it worked he slept for 6 months and was fine.
When I finally had relief from Buprenorphine, 29 th October 2019 I slept so much at the drop of a hat in the movies in a taxi , the type of sleep I don’t think I would be woken from if the house was on fire, it was so deep every opportunity.
When you drive it is the stating that creates that sleepy feeling like a baby does they stair and then they are asleep.
Our bodies need time.
The other I noted not just in my sleep but others is whilst we are initially elated at our sleep, we still have fear of maybe not being able to regularly access this medication especially in Australia and then there is the PTSD .
What we have been through is a type of torture , so it will take time to recover. I have heard of this many times went through it myself thankfully it passed however it did take at least 19 months for my head to catch up with my body so to speak.
Wishing you all the best tell yourself
This part is temporary ,
so you don’t dwell on it
know that it is pay back and you will catch up.
Remember you have been to hell and back with a terrible invisible disease , your brain is plastic and given time it will remodel to a new and improved you.
I am finally relieved of RLS by taking JUST 5mg Methadone .... after being on DA's for over 10 years plus trying all kinds of other nasty medications to no avail! Now my biggest fear is the Methadone will be taken from me because of it being misused. I still have chronic arthritic pain but it is helped also by the Methadone! Good luck to you... give it time.... I hope you can find the relief I have found!
Lbrosa, that is very good news! I remember you from earlier posts and your struggles with the RLS and the medication. 🤞🏼 it stays like this. There is an already older study that followed people with RLS on methadone. The people that could tolerate it (a few had unbearable side effects) remained on it for 10+ year with no or only a very small dose adjustment. May it work out for you like that too.
hello lbrosa, I just came across your posts and am wondering how things went with the LDN? It sounded so promising and so just was curious if it continued to work and whether you still take it. Hope you are well!
Steino, I am not sure if the CPAP is still a question for you or not. I have been told by more than one sleep doctor (one of them at Stanford) that sleep apnea can cause RLS. The CPAP can sometimes be a quick fix (if you are one of the lucky ones). I wasn't. It sounds like you are struggling through with it to no avail. I believe if it is going to work you know pretty quickly. Yes, it will stop your snoring regardless. If you are not able to use it, I suggest you look for some youtube videos on suggestions on how to make friends with the hose. One thing I remember doing was wearing the tube around during the day. Methadone will definitely make your breathing an issue. It amazes me that methadone can cause anxiety as it (5mg) put me to sleep all day and night. Good luck with it all.
Hi Steino. Just an aside on the sleep apnea. It runs in my family and extended too. Some of the very severe ones have had surgery and use the CPAP but the majority now use a mouth guard that has changed their lives. It adjusts the position of the jaw and keeps breathing smooth and even. It can be very helpful. If you are interested I can get more info. All the best as you find the best way forward!
Mandibular advancement device (MAD). The most widely used mouth device for sleep apnea, MADs look much like a mouth guard used in sports. The devices snap over the upper and lower dental arches and have metal hinges that make it possible for the lower jaw to be eased forward. Some, such as the Thornton Adjustable Positioner (TAP), allow you to control the degree of advancement.My sister uses the brand Silencer. Not sure about bro. In Canada it is prescribed by doctor or specialist to a provider in your area They make and adjust it for your personal use and need.
Hope this is helpful. Extra Benefit is it reduces snoring a lot!!
Hi and just wanted to add my 2 cents. As some of you know, I, too, have gotten off both Ropinirole and Pramipexole at the end of August. I took Ambien off and on over the years, as well. It was a fight but I first got an iron infusion in April and then finally persuaded the doc to give me methadone in August to get off the DA's. I was prescribed 10 mg but most nights took about 7 1/2 mgs. The bad nights I took all 10mgs.
Then, due to this misinformed and/or uncaring neurologist, I had a night in October where I had no methadone left. He said he only agreed to 1-2 months of the meth and did not want to continue giving it to me. I had no idea it would be such a serious problem; the night before I had taken my last 1/4 of a 10 mg meth pill and I was ok. Also-I had not been on the methadone long-only about 2 months.
Needless to say, the night without any meth was the worst night of my life. I had RLS everywhere and sweat poured out of me. I rocked and sweated and jumped around and even considered one horrible option to the hell. But, I made it through and the next day I did get a few more meth pills. I took 1/2 at the pharmacy counter and it was all over in 15 minutes-I was back to normal.
Now I am with a new doctor who did prescribe the methadone to me but does not want me to stay on it. I do not want to stay on it now either-the fear of that night happening again is with me every day. He gave me Horizant samples to try-so far that is not working. Although I have no idea how to really take it. His suggestion to take it early in the evening definitely does not work.
Oddly, this new doc told me NOT to taper down from the Methadone. I try to do it on my own anyway. I have no idea why he said that when he doesn't want me to stay on it and he knows what happened that one night.
I also tried a CBD combo that a poster on here suggested. So far that doesn't seem to work either.
I do have side effects from the Methadone-periodic intense heat/sweats, some intense itching at times, constipation, and I fall asleep at the drop of a hat later in the day, or while driving long distances.
But, I would say nobody even knows what I am going through-I seem very happy and normal to everyone. I am not depressed. I exercise, my weight is good, etc.
I am trying lots of supplements, per usual. He suggested flax seed oil. I also cut out artificial sweeteners-from 8 cans of diet coke a day to only one. I will do none at all next. I was able to do this very easily, to my complete shock and surprise. I just switched to Zevia drinks.
I will try cutting caffeine next, although I have cut most of that already, too.
This current month of methadone is almost out and the fear of not getting more is intense! I keep calling the doc to see what he is going to do. So far he has not renewed the prescription but I assume he will, at least short term. I have no idea what to do or how to get off of it. This last call I asked the nurse to ask him...HOW do I taper off of this?! Even though I asked him that at the appt.
Tonight I will try another Horizant and take it much later, along with 1/2 of the 10 mg Methadone. But, I will most likely awaken with my legs seizing up. Then I will take 1/4 more of the methadone and continue sleeping.
A vicious cycle as I keep trying to take less of the Methadone each night, after such a scare, to no avail.
If anyone is actually still reading this-do you know how long the withdrawal from the DA's actually is? Dr. B just discussed the "10 day washout period," as far as I know. I just wonder if that is still part of my problem?
For a few nights around the awful meth withdrawal night-I did go back to the DA's. I was so desperate. But other than those nights, I have been off the DA's since Aug. 29. I know-I am so bummed that I had to ruin my streak after all that I went through to get off of them! But now it has been another month off of them.
I should also add that while the Methadone helps you to sleep like a ROCK later in the day-at night it can be hard to fall and stay asleep. Especially when I first started taking it. I had some sleeping pills and, knowing the risks of combining the two, I just took a little bit of one and would then sleep very well. I have no sleeping pills left now, however, and nobody wants to give you them when you are taking methadone. Although I did get a few. I also tried the CBD capsules to help with that, too. I gave up on the THC gummies due to the over-eating and just general annoyance/expense of taking them. I have since learned you have to smoke the THC to get certain benefits, which I don't want to do. I have enough issues!
Steino-I hope my information helps add to your arsenal of insight! Best of luck to you and everyone reading, as always. Thanks in advance for any input you may have!
Teddi, I hear you. This is difficult, especially as the ones we turn to for advice do not seem able to give it. Dr Buchfuhrer bases his advice of remaining on the methadone on several longterm studies. People used a stable dose of it for more than 10years to control their RLS, and still counting. I wish there was a follow-up of the group in that/.these studies, as it was published I think 20years ago!
It is known that stopping methadone will induce (severe) RLS, even if you are not predisposed to it. Meaning, people without RLS but taking methadone to get off their opioid addiction will get it. I don't know how long it lasts, and that may depend on how much and how long they have taken it. It may also mean that after stopping the methadone, the 'withdrawal-RLS' will cease after a few days. But they will be horrible says, as you experienced.
If you don't want to or are not allowed to continue the methadone, Horizant may be a valid option. However, from our collective experience, Horizant and other gabapentinoids often take some time, up to 4 weeks, to become effective.
Do het yourself informed thoroughly. If you aren't yet, I would advise you to become a member of RLS.org. They are very active and leading in supporting and instigating not only research but also treatment guidelines. Their fall 2021 journal Nightwalker has again a good article on augmentation and its treatment. And it includes the complete revised Medical Bulletin for RLS.
I am on buprenorphine, also a strong opioid. I don't want to, but it allows me to sleep and have a better life than on other meds (augmentation or didn't work or couldn't tolerate). It comes at a price, but our options are limited. I hope you get good help from your doctor. Arm yourself with relevant info and discuss thoroughly first before changing treatment. Good luck.
Lotte-thank you so much for the support and all the information! I am a member of RLS.org but I haven't seen that article; good tip! I didn't/don't know anything about methadone withdrawal and I also assumed that it applied solely to the high dose people. Everyone kept saying in the research how low of a dose this is, blah blah. So I was mistakenly holding on to that fact and thought I could just stop after getting off of the DA's. Wow-has this all been a shock and a new battle.I am so glad you are doing well and on a steady regimen! xoxo
Tell your doctor you have a three month plan and to give you, and your out of whack dopamine receptors, a chance to return to baseline. Remind him this isn’t about opiate addiction it’s about a long term strategy for RLS.
The DAs are ancient history. Now you are an athlete in training. You gotta build back better. It’s an everyday regimen. It starts with a 14 hour nightly fast between 7pm and 9am. Many people have found relief with this alone. I think you should throw in anaerobic exercise by day for good measure which is also supposed to up-regulate the D2s.
I also like berberine which is a natural substance. It’s the only one I could find that will allegedly down-regulate the excitatory D1 receptors while up-regulating the calming D2s. That’s what everyone post- DAs need. Take in morning just in case it triggers symptoms. No pain, no gain. Research it yourself. Long article- see table at bottom onlinelibrary.wiley.com/doi...
Give yourself some fun after your 7pm dinner. Watch a movie, do yoga, write a book, do research. An hour before bedtime take 25 to 50 mg of ferrous bisglycinate and I don’t care if you had an infusion. You need that nightly push of iron. See my profile page.
It will probably take a week of this routine - fasting, berberine, exercise, fun, iron, rinse repeat - before you might actually question if you need that methadone, or maybe very little. My yoga instructor said the best thing for insomnia is to raise your legs for a few minutes against a wall and bring your attention to your breath and the fact that you are not a diseased person you are a zen Buddhist athlete on a mission. We have people nod off in class in this position. If you do need methadone, even after the iron, then hold it in your hand and thank Mother Earth for her medicine, but let her know that one day you will no longer need this from her.
As the weeks roll on and you are sleeping well, eating well, fasting and exercising, it is more likely than not that your receptors will take that inevitable crawl back to baseline/homeostasis. That’s when you can truly plot your next course of action and truly see where you are in terms of your RLS. You may find you will always need to have an emergency med in the house. Maybe your doc would rather see you on tramadol.
If you’re worried about withdrawal from methadone don’t be. For every symptom (that will last 2 to 3 days tops) there is a treatment. Clonidine for racing heart, zofran for nausea, Advil for muscle aches, benzos for anxiety and trazodone for sleep. These are modern times, there’s a treatment for every symptom and very little of each goes a long way. Most of these drugs a doctor should readily prescribe with some of the drugs being over the counter.
The fasting and iron will do more than you ever dreamed possible. Mark my words.
LonePine-thank you, thank you. This is all very helpful and I will try it immediately. I keep asking and wondering if part of my issue is still the DA's and withdrawal but I never get an answer. This is such helpful info as to what my brain is still going through. Plus I had those 10 days or so of a setback where I was taking some ROP at night as I ran out of the methadone. Is walking anaerobic? I tend to exercise more aerobically: long bike rides, light jogging, etc. Although now that it is winter, the biking has been curtailed quite a bit. But my building does have an indoor gym. Not sure what I will do considering Covid issues though.
It is so good to know that there is help for the withdrawal! I can't tell you how much mental relief that gives me.
Thanks again and I will update you as to what happens with this approach.
Unbelievably, my new doctor, who has RLS himself, is still not getting back to me about refilling the methadone. I have called 3-4 times this week. Omg-the fear.
Anyway-thank you so much! You and Lotte have already helped me on this new path!
Here's an article explaining Anaerobic fitnessvigil.com/types-of-a.... This too. fitnessvigil.com/types-of-a... like it's a matter of giving it all you got for 30 to 60 seconds. First warm-up, then burst, then resume normal rate, then after a few minutes, give it all you got again. Sounds like fun. Sounds like you can just do it a couple times a day. Ok, drop and give me 10
Btw, as my very first article states, the berberine is very bio-UNavailable. I suggest opening up the capsule, putting the contents in a small cup of water and mix in a flavonoid like quercetin or resveratrol.
I already bought this one and I definitely will not be mixing or adding. I hope it still works. I am so tired of my part time job of taking supplements! I have to keep it as simple as possible.This sounds like a really good one:
Wow, sounds like good stuff!!! Feel like being a mad scientist, like I am? Open up a capsule and empty in water and see if dissolves, even a little bit. I just tried some other substances with the berberine, other than a flavonoid. I added some water-soluble vitamin e and it took me 50% of the way there. Then I added vitamin c, in the form of sodium ascorbate, and that brought me home to 100% dissolution. Here' my complete experiment with the berberine: healthunlocked.com/rlsuk/po...
Don't feel the need to add anything to your berberine. But please do try opening up the capsule so I can update the above post and let everyone on here know that this form of berberine doesn't need to be combined
This is kind of a big deal thing...so I think. If you think of the world in terms of yin and yang then berberine is the yin to the dopamine agonist's yang. WE SO NEED THAT. Even though I've never taken any DAs I've been taking the berberine, in dissolved form, for the past two weeks. Prior to that I took berberine on and off, for months at a time, to try to modulate my gut microbiome because that's where most of it ends up and that's fine when you're tinkering with your large intestine. Anyways, I noticed a certain amount of restlessness (not really restless legs) after taking the dissolved berberine for the first week. It was an interesting feeling, which I didn't care for, because I like being more Zen, but I do not like feeling tired, just calm.
So you should report back to us on any such sensations. Like I said, this is serious stuff. We want people who are coming off the DAs to return to baseline as quickly as possible to limit the suffering and the need for opiates. Berberine has been used medicinally for 1000s of years (as an antimicrobial) and has a good safety profile, possibly because a lot of it gets pooped out, along with the pathogenic bacteria. Just like the DAs take a while to beat down your good receptors (and up-regulate the excitatory ones) I would imagine that berberine is not an overnight cure. And if you do feel restless all over after taking it try not to panic. It will pass in a few hours. And in the long run your receptors should thank you even though you're kind of tormenting them in the moment. Even the high intensity training might make you restless. I will never forgot one woman on here who said every time she hit reached peak on her stationary bike she would have to impel herself off because the RLS got so intense. That alone tells me there's something to that anaerobic exercise. I will try to find her post.
Anyways, the berberine is a supplement and a long-term treatment, whereas the ferrous bisglycinate is not a supplement, it is a drug, when taken as I describe. Just ask GillRLS: healthunlocked.com/rlsuk/po...
Sadly, the iron has a much higher success rate among RLS sufferers who were either never on the DAs, or who are far removed from them. Still worth giving it a go. If you have the Kahonas, it might be fun to wait for the RLS to set in one night, take the iron and wait an hour. Then take the methadone if the iron brought you no joy. Oh and that long nightly fast, man oh man, you just can't beat Mother Nature. She meant for us to work and eat with the sun and to sleep and fast when it sets. It seems that when we listen to her we benefit. Several people on here feel they cured themselves by doing that.
Thank you, thank you. Such good info! yes, I will let you know if it dissolves. also-i had tried the iron many times and it never worked. BUT, i also felt that NOTHING would work for me until I got off of the DA's. and that the DA augmentation overrode any possible solution. So, now I finally free of them! I did not expect all of what I described above in that long post, but at least I have a plan now and more understanding of what is going on with me-thank you!!
Here's the member that goes flying off her bike: kelka
8 years ago
No, its not soreness. If I work really hard it can be a bit worse in the evening but I get it every night anyway.
Its not lactate either. It is a really short bout of the rls feeling when you go anaerobic say in a short 20 second set in tabata training or something. I wondered if it was the oxygen deficit because I can't work out what's happening there but its so complicated. It disappears very quickly but is so intense I nearly jump off my bike with all the stretching I do :-))
Just thought it was interesting. I will have to look into it more.
Teddi, doesn't it seem that if it doesn't kill you first, it makes your receptors better?
lol-omg-this is all definitely killing me, that is for sure! I wish I had never ever started those DA's years ago!I woke up with terrible leg seizing last night and tried the iron/C, along with some magnesium, instead of reaching for more methadone. It might have worked for 30 minutes or so but not for long.
Well wait, the iron should be in a highly bioavailable form ie ferrous bisglycinate and you probably need to take 50mg of it in THAT form. Then you don't even need vitamin c. Never with magnesium...they tend to compete. Ferrous sulfate would do -0- for me.
thanks for the info-yes, that is what I took but not enough-only one. and yes-i was desperate and took the magnesium at the same time, hoping one of them would work and forgetting about that! this forum always says to take C with it?!
The berberine should be taken in morning only. If we are to believe the articles it is a dopamine antagonist. Thus, should do just the opposite of the dopamine agonists. In the short run (a few hours) you may curse the day you talked with me, but in the long run the berberine should push your receptors back to baseline quicker than they would on their own...and who knows, maybe a little better.
I am gearing up to try it one of these mornings! thank you! I wonder why nobody talks about it on the forum? I just keep reading how our receptors are damaged for good. but, i have the one i mentioned already in hand and will take it!
I’m not a fan of infusions except for too low ferritin. But since you mention it I like iron dextran for infusions. Ferritin isn’t our problem - so I think. It’s that nightly drop in the unbound iron in our blood that is the problem.
Did your RLS seem worse in the days following infusion. If my theory is correct then RLS should get worse before it gets better because of the release of hepcidin. FreeGaza indicated his RLS was worse for 4 weeks after infusion. I’m afraid if my ferritin ever gets too high then that nightly iron I take will be blocked by hepcidin and won’t help. Here’s another emergency substance you can take if u wake up with RLS and before u reach for the methadone. See paragraph 7:
thank you! how did it go?! i didn't notice RLS being worse after the infusion. I actually thought that it seemed better, started much later at night, and that if I had not been on the DA drugs at the time, it could have really helped.
I think I was just on them for too many years and I don't think anything I tried could even help at that time. And maybe even not now! I feel like I still need time before anything natural truly works. Planning to try the berberine after the holidays. And your other suggestions!
Oh I couldn't agree more. None of the things I suggested are meant to substitute for the methadone. The hope is that these are things that will help your receptors return to baseline quicker than if you do nothing at all. In my mind, methadone (if you can get it) is the platinum standard for getting off the DAs. I personally wouldn't even waste my time with the others (Gabapentin, Lyrica, tramadol)...but that's me. I'll try to find the article, but it seems that if you "binge" methadone (meaning only take it once a day) it will actually down-regulate the excitatory D1 receptors. People coming off the DAs really, really, really need this, supposedly. Supposedly, it is these up-regulated D1 receptors that are causing all the problems, rather than the down-regulated D2 receptors. The article went on to state just the opposite for Buprenorphine, which will down-regulate the D1s only if taken three times a day. NO matter how you take either drug (binge versus TTD) they will still have the tendency to down-regulate our D2 receptors. It seems all drugs that relieve pain or symptoms of RLS are going to be a drag on the D2s and it's just a matter of degree. Methadone < DAs.
So that is why I want you to do everything you can to find counterweight for your D2s. None of which will provide immediate relief and may even give you short bursts of RLS during the day. No pain, no gain. Up-regulating D2s it sounds like can be a somewhat painful process. 14 hour nightly fasts, take your breath away anaerobic exercises and then berberine which in a highly bioavailable form will likely give you daytime RLS. Omg, the berberine is not only supposed to up-regulate the D2s, but it is also supposed to down-regulate the somewhat evil D1s. I don't see how it cannot torment someone susceptible to RLS. Well none of these things are exactly a picnic when it comes to your day to day RLS. In the long run I believe you will be glad you tried these things. The only thing that stands a chance of providing some immediate relief is the ferrous bisglycinate. Good luck and keep me posted here and there. Now to find that article.
If what the researchers are saying in the article is true, it is so incredibly important to those of us with RLS that are on these substances I feel like sounding a three alarm fire. This may allow people to stay on a low dose of these drugs forever if need be or to more readily come off of them. Everyone on Methadone or Buprenorphine should show this article to their doctors and expect an explanation and if pertinent to be prescribed the drug in a manner that will down-regulate their D1s.
Wow, I go out of state for a week, return to read my feed, and find mad chemists have taken over. This all sounds so very interesting. Given the state of my poor damaged receptors, this weekend I am going to have wade thru all you have been sharing to see where I need to start activating. Awesome stuff!
Good news is my depression seems to finally be receding after 60 days on the methadone/clonazepam regime + 45 minutes/day heavy aerobic workout 5 days/week. At a minimum, I will plan on integrating anaerobic routines into this. Thanks all!
Of course it’s receding. We all have you so confused you don’t know up from down or right from left. Reminds me of what someone once told me “not a lot of anorexia in 3rd world countries”. That can be translated into “not a lot of depression among those going insane.” Don’t worry, I’m right there with you on the road to madness. “What doesn’t kill you, simply makes you stranger.” quoting the Joker in the movie, The Dark Knight.
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