I only learnt about Health Unlocked and its efforts on RLS through RLS -UK and this is my first post.
I have suffered from RLS for several years and various doctors have prescribed all the general medicines starting with antidepressants (amitriptyline, mirtazapine, imipramine, and citralopram), dopramine agonists (ropinirole, pramipexole and rotigotine patches) and a2d ligands (gabapentin. and pregabalin)
Doctors also prescribed melatonin, Co-codamol30/500 and ferrous sulphate,
After two to three years on rotigotine patches (up to 4 mg/da) they where stopped and only then did I realise I was in augmentation because of the dopamine agonists. Finally the consultant neurologist recommended low potency narcotic analgesics (oxycodone) or methodone. I reduced the pregabalin dosage to 200mg/day and started oxycodone (10mg/day Targinact). When this failed to give any relief the consultant suggested a gradual increase to 30mg/day oxycodone but at 25mg/day the side effects where too much for me and had not achieved any relief.
I then decided on my own to reduce to zero the oxycodone and increase the pregabalin to 300mg/day. So far I have not had any effects (better or worse) and assume I am still in augmentation? I get very little sleep with my RLS ache starting late afternoon and not allowing any sleep until the early hours next morning. The severe ache starts in one leg and then stops and moves to the other before it eventually subsides.
Hence my question to any fellow suffers ....how to escape augmentation. Does it mean my dopamine receptors are too damage to recover?
I hope someone can guide me because I now think that the normal medical professionals cannot?
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davchar23
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Hi Dav, are you still on an antidepressant or melatonin? They will make the symptoms of RLS worse than they have to be. So can statins and calcium channel blockers. Are you on either of those? It’s sheer madness that any doctor would prescribe mirtazapine or melatonin for RLS. Do you recall if you were on any of the above drugs when your RLS began in full force? What we usually see on here are people who were prescribed an SSRI, immediately developed symptoms of RLS, the connection wasn’t made and DAs were prescribed. The good news is, other than the DAs, none of these substances down-regulate the dopamine receptors, and may actually do just the opposite - meaning up-regulate them.
You weren’t on the DAs anywhere near as long as some on here. Plus, it sounds like you’re off the DAs (for several weeks now?) and you do get some sleep every night which believe it or not is great for someone freshly off the DAs. Once off the DAs, a lot of people on here will start either high dose Gabapentin or Lyrica. If that fails then low dose methadone or Suboxone or Buprenorphine usually does the trick.
The further away from the DAs you get, time wise, the better. I’m surprised the oxycodone has done nothing for you. That leads me to believe you are still on a drug that worsens symptoms? Someone will be along shortly to give you more advise on dosages of these drugs.
It sounds like you tried ferrous sulfate without success. As soon as you can, you MUST try 50 to 60mg of ferrous bisglycinate (not sulfate, never sulfate, waste of time) on an empty stomach about an hour before bed. Provided your dopamine receptors are near their baseline, and you’re not on an SSRI, the iron may very well provide a good amount of relief that very first night. Iron is to RLS, what aspirin is to a headache - taken the way I describe. We with RLS have very low brain iron stores and rely very heavily on serum iron (not ferritin) to keep our receptors chugging along. Serum iron plummets at night. The non-RLS world is not bothered by this drop, but we are. That’s why we get RLS mainly at night. Good luck!
Dear Salem Lake thank you for your detailed reply. There is a lot for me to take in but perhaps if I answer some of your questions it might clarify something.
I am not currently taking any antidepressant or melatonin but I do take Atorvastatin and also some heart drugs .....Bisoprolol, Edoxaban , Ramapril and Amlodipine. I don't think these are calcium channel blockers are they? I will reduce the statin for a few days and see if that makes a difference.
Sorry but i don't recall if RLS got worse whilst on melatonin or antidepressants but it could have been they case.
Yes I have been off DAs for about a month and now only take pregabalin (300 mg/day) since I came off oxycodone a couple of days ago. How long does it usually take to "wash out" DAs and come out of augmentation? I have seen a figure of 35 days I think?
I have noted your comments on iron. I have just had a blood test (for ferritin) but your remarks on serum iron are new to me.
Could you please explain what you mean by down (or up) regulate the dopamine receptors?
I appreciate your reply and will post any developments
Yes, I will try to explain. First off, we with RLS have small and few D2/D3 receptors, compared to non -RLSers, as seen on autopsy of the brains of people diagnosed with RLS during their lifetime. Dopamine agonists beat down those pathetic receptors, even though they relieve the symptoms of RLS quite nicely, initially. This is called “down-regulation.” Our bodies struggle to maintain homeostasis, and I believe in almost all cases, our dopamine receptors will crawl back to baseline once given a reprieve from the DAs.
On the other hand, there are drugs and activities that can up-regulate our receptors, but that can be a painful process and will make the symptoms of RLS worse before better. No pain, no gain. According to this article, statins can “up-regulate” our receptors. ncbi.nlm.nih.gov/pmc/articl... And you are taking a statin, so it is most likely making your symptoms worse while allegedly making it better in the long run.
Calcium channel blockers(CCB), like Amlodipine, do the same. They can increase the number and density of our D2 receptors, but oh so painful in the process. Amlodipine supposedly is least likely to cross the blood brain barrier among all the various CCBs, yet anecdotal evidence shows it can trigger symptoms of RLS. Once again, no pain, no gain. So by taking these two drugs you have suffered, but l believe have done yourself some good in the process.
On the other hand, Ramipril might actually lessen the symptoms of RLS via the D1 receptors. It sounds like this drug tends to block the D1s which give off a more excitatory signal. The DAs actually block the D1s as well. Great in the short run, but bad in the long run because by blocking a receptor it grows big and strong. We want the D3s to grow big and strong, NOT the D1s. There is a Yin/Yang relationship between our excitatory D1 receptors and our wonderful calming D3 receptors. The DAs are really the devil incarnate. They down-regulate the calming and up-regulate the excitatory.
For one reason or another, as you can see, it might be wise to discuss stopping these three drugs with your doc. I think the other two are fine, but I hope others chime in.
Hopefully someone more knowledgeable than me can explain to you what your next steps should be in terms of RLS meds. If and when you stop those three heart medications you might find your symptoms greatly reduced and then drugs like Gabapentin, and my favorite, ferrous bisglycinate, might be all you need.
Unlike bound up ferritin, serum iron is more free-floating in our blood. Our brains really don’t seem to have any problem sucking it up while it is plentiful during the day. Mother Nature, in her infinite wisdom, does not like all that free floating, heavy metal iron in our bloodstream as we prepare for slumber. There’s a hormone in our body, called hepcidin, which is the iron gatekeeper, and it increases through-out the course of the day and slowly scavenges up that serum iron until it’s reduced by about 60%, with a nadir of midnight. I, and probably I alone on here, believe that our ferritin levels have little to nothing to do with the symptoms of RLS, unless you’re talking about iron deficiency anemia, which is a trigger for RLS, no different than an SSRI. Eradicate it and your RLS will improve. With that said, I have read that LOW iron stores/ferritin can mean worse augmentation symptoms and raising ferritin can help to ameliorate augmentation.
Can I ask where you have read that hepcidin acts to remove iron from the bloodstream? I have seen many explanations saying hepcidin inhibits iron absorption from the gut but not where it actually removes iron from the bloodstream. Thank you.
Sue, you’re a smart woman, and you advise people on here a 100x a day, so why not do your own research, especially if a subject, like hepcidin, piques your interest? Anyways, this article is more detailed. ncbi.nlm.nih.gov/pmc/articl... Happy googling 😵💫
I can't see the full document. In the abstract that's available to me it says
"Moreover, the results showed a network in which diurnal variations in systemic iron levels were tightly regulated by hepcidin and Tf/TfR via DCYTB and DMT1. "
We know hepcidin regulates intake but there wasn't any more detail that I could see, although as a non-biologist I might have struggled anyway.
Ok thank you. That's an interesting article and clearly illustrates that hepcidin has a role in regulating movement of iron between gut, liver and plasma as well as into iron stores e.g. transferrin, as you say through its management of ferroportin which is the iron transport system. The levels of hepcidin and therefore the degree of that regulation appear to be regulated by levels of transferrin, serum iron and red blood cell creation amongst others so its role in diurnal variation doesn't seem so clear to me e.g. does hepcidin go up because iron levels fall for some reason or is it the other way round? From what I can see it's an amazing balancing act between levels of iron in serum, gut, liver and iron stores (transferrin) where it responds to a change in any of these in an effort to restore an equilibrium. I probably need to re-read a few times as it was clearer second time through.
Dear Salem, thank you again for your support and detailed reply. I will study it as I try to plan a way forward and discuss the iron drug (ferrous bisglycinate) with my doctor.
I have to tell you that I have been taking both the statin and the CCB Amlodipine for years which does NOT seem to to fit with your analysis that they will eventually give me some relief. I believe my doctor will agree to stopping (at least for a short time) both atorvastatin and amlodipine but not the Ramapril (which is a blood pressure reduction drug).
Can I please ask you how long you think it takes after stopping DAs for the receptors to "crawl back to baseline"?
Could I also ask you if you have found Gabapentin preferable to Pregabalin?
I intend to give the oxycodone another try at the lower dose as I am in a terrible place at the moment. Do you think this will delay my "escape from Augmentation"?
Dave, you won’t “feel” any benefit from these substances until you stop them. I took a very small dose of melatonin for around a year and it would have driven me bonkers, but for the iron. When I realized melatonin worsens the symptoms of RLS I stopped taking it. And, I was able to stop the iron. My RLS went silent. Really silent. I believe the melatonin up-regulated my receptors, as painful as it was while I was taking it. Slowly my up-regulated receptors crawled back to baseline, just as down-regulated receptors do. So fear not! Time is your friend.
If it were me, I would start out with Gabapentin. 300mg at 7pm and 300mg at 9pm. I would avoid opiates if possible. To some degree, I assume, they do down-regulate the receptors and stop them from returning to baseline. There are many stories of people taking opiates who develop RLS after stopping opiates taken for another reason. I assume because they are pre-disposed to RLS and then the opiates down-regulate the receptors to a point where they now, for the first time, develop symptoms. But you need relief. So if Gabapentin doesn’t do it, then on to the opiates you go.
You really, really need to determine how much of your symptoms are coming from those two medications. You don’t want to load up on drugs you don’t need. Once those two drugs are out of your system (with doctor’s supervision) in a few days you should have a better grasp on just how much drugs you need.
I have a good feeling that the iron and Gabapentin will be enough. I will provide you with a post regarding someone who was in a similar situation to yours who got immediate, complete relief with that combo of treatments. Pay special attention to BAZ33: healthunlocked.com/rlsuk/po...
Side effect of coming off opioids or just needing your next dose is raging RLS.It's one of the 1st and worst withdrawal symptoms.. and in my case gets worse and worse and worse with no breaks for literally days untill I get more oxycodone, fentanyl or any opioid.
I've also struggled with opioid addiction and have been told by my Dr and medical professionals I will never be able to completely stop taking it.
Therefore really really struggled to get the dosage down from nearly 200mg a day to 15mg and a 12mg fentanyl patch.
Withdrawal from opioids is absolute hell on earth. I've done the agumentum on 6 parmpecole a night and it's absolutely nothing like withdrawal from opioids.
Also the awful feeling spreads all over my body.. on many occasion after 48 hrs and over id happily shoot myself.
Not at all being dramatic just truthful, the effects on mental health are horrific and torturous.
Dav, welcome.If you only stopped dopamine agonists a month ago, you will still be having withdrawal symptoms. It can take months to settle.
Your Doctor switched you to Targinact, but you say the side effects were too much. What were they? As you were still in withdrawal, the Oxycontin might not work to cover all the symptoms if not taken at regular intervals throughout the day. Oxycontin has a short half life and can therefore cause mini opioid withdrawals for many people if not taken every 5 or 6 hours throughout the day.
As you stopped Oxycontin, you will experience opioid withdrawals, the main symptom of which is RLS.
So, at present, you are still in dopamine agonist withdrawal AND also in opioid withdrawal. That's why you are experiencing RLS.
I suggest you stick with 300mg pregabalin, which takes at least 3 weeks to be fully effective. Don't add any other meds.
In the meantime, ask for your actual serum ferritin number and ensure it's above 100, preferably 200.
If 300mg doesn't start to work after a month, then you can let us know and we can help guide your next steps.
But do let us know what the side effects of Oxycontin were, because opioids are usually highly effective if taken at the right time and if the side effects can be resolved.
All anti depressants and sedating anti histamines and melatonin worsen RLS and should be avoided.
Dear Joolsg, Thank for your response which I found very useful. My comments are:-
The side effects of Targinact only tripped in at 25mg/day but perhaps I should have persevered at say 20mg/day. The tablets were the slow release type (with Naloxone) so should not have been a problem but no RLS relief The side effects at 25mg/day (10mg in morning 15 mg in evening) were abdominal pain and bloating,dry mouth, weakness of limbs, nausea, sweating, flatulence, and increased urge to urinate .
How long would you expect before a combination of pregabalin and oxycodone becomes effective.... a few days or weeks? I have been on the pregabalin for months so it should be effective or would it be affected by the DAs (ie Rotigotine patches until late July )?
I think I will retry the oxycodone (20mg/day) plus 300mg/day Pregabalin again as I need to get some sleep soon. How do sleeping pills such as zopiclone affect RLS? I do not take any currently.
If Buprenorphine and methodone are not licensed in UK how does one get them and would you think i should try to persuade my GP?
I only had the ferritin blood test last week so will post my number in next few days.
Opioids affect the gastro intestinal tract, which explains the bloating/flatulence, but the naloxone in Targinact is supposed to help that. Opioid side effects tend to kick in after a few days or weeks. Some settle, others remain. Not everyone experiences them because we all react differently.The nausea is common and usually settles within a month.
If you decide to try Targinact again, I suggest you ask for 5mg pills and take them 4 times a day. That would prevent the mini opioid withdrawals many experience.
Also, start taking a really good probiotic like Symprove or VSL, as they will improve bloating, flatulence and nausea.
The sweating is also a common opioid side effect and can be helped by taking a non sedating anti histamine like cetirizine or loratedine at night.
Sleeping tablets can be useful. Zolpidem for example, but if your RLS is still breaking through, you wake up with RLS and then fall over when you try to walk it off as you're too drowsy. Zolpidem should only be taken once or twice a week.
The RLS will settle, but you will need to wait at least another week or two because the DA withdrawal combined with Oxycontin withdrawal are still there.
So, either stick it out for another few weeks to let the Oxycontin withdrawals settle, or, if you cannot handle it, ask for 5mg Targinact and take one in the morning, one at night to see how you respond. You could then add another two 5mg doses so you are taking them every 6 hours if you have breakthrough RLS during the night.
Buprenorphine and methadone, like pregabalin, are not licensed for RLS in the UK.
The strange postcode lottery here means that they can be prescribed in some areas, but not in others.
Many areas have Buprenorphine as a 'red list' drug and only neurologists or sleep specialists can prescribe.
I am in S. London and my GP is allowed to prescribe it off licence.
It is still very early days for you.
It took me 5 years to find the right meds to settle my severe RLS after augmentation on Ropinirole.
I'm fairly new to rls, and have developed it from coming off methadone too quickly. I am in the UK. Methadone, suboxone and buprenorphine are all licensed in the UK. However, around 8 years ago, they moved the prescribing of these controlled drugs from GPs to drug drop in centres. That is not to say that GPs cannot prescribe them for things OTHER than addiction, they probably can. I started taking opiates 30y ago, most of that time I've either used methadone, buprenorphine or morphine or in absolute desperation heroin. My addiction started from an injury, and I was prescribed morphine.
I would suggest the best opiate for rls is methadone. It's a 24h drug, so u take it once a day, and it lasts for 24h, often for people with no opiate tolerance like you, it could actually hold you nicely for even 6h longer, if u forgot Ur dose. It is a long acting opiate, unlike Oxy's which are short acting and you need to take a dose every 6h or so. Also easier to taper off methadone as it's a liquid. I'm now down from 80ml pd (very high dose, as I was sadly in the midst of active addiction at the time) to 18ml pd, reducing 1ml every two weeks. It's a long slow taper down when you get to a quarter of Ur original top dose, and this is done to prevent rls. Didn't work in my case, which is my fault for insisting on dropping the first 60ml faster than recommended. Methadone is one of the strongest narcotics manufactured today, but I also believe one of the best, and I've tried them all over the years. If you like the sound of a 24h dose, explain that to your doctor. He cannot refer you to a drug drop in as you don't have an active addiction, so theoretically, if he is not licensed to prescribe it, he will refer you to a UK gp who is.... Some surgeries used to have signs up saying Do Not Ask for Methadone as they either didn't want addicts in their surgery OR their GPs were/are not licensed to prescribe it.
I wish u luck David Of course if u need more info just reply!
Fee,Thank you for your useful support data on methodone. My GP told me that their practice does not work with methadone when he prescribed oxycodone but after your response i will, if no joy with my current mix of oxy and pregabalin, ask him to send me to a GP who do.
You know, I was thinking, there is another option available to you, if you prefer taking your meds once or twice a day. Alot of the opiate painkillers now come in extended release. Depending which ones, depends how long for. Now if you think that would help you maintain narcotic coverage, instead of forgetting an oxy every 6ish hours and thereby starting a withdrawal, which will absolutely exacerbate rls, as it is one of the most common symptoms of opiate withdrawal, maybe ask your GP about extended release (long acting) opiates that can be used on label (licensed) for rls. Would save trying to find anyone who would prescribe methadone for rls alone. I'm on methadone for addiction, so it's never been hard for me to get it. Your situation is of course very different. Please do take care with opiates David, and if you decide to stop, taper VERY slowly, or if unsure at that point, I can point you to some sites, and share my experience of tapering. Have a lovely evening, and hopefully, restful sleep. Taking my bedtime gabapentin now, otherwise I won't sleep either! Fee
You are right but my tablets are already "supposed" to be slow release but I am told by Joolsg that there is a "debate" about whether some of these tablets actually do last for what they say on the packet! So for the time being i have changed from every 12 hours to every 6 hours and able to do this a my tablets are 5mg each.
I really get confused by the different combinations different people take. You take methadone and gabapentin whilst I am taking pregabalin and oxycodone. basically the same but different apparently in end result.
On opiates is it correct to say that if a person is even a short times (say an hour) late in taking a 6 hour tablet then symptoms are experienced?
Jools is right. I know lots of people who have said the same thing about extended release oxy's. The reason I am on methadone and you are not is very simple. I am an opiate abuser, and you are not. Therefore, my prescribed methadone (a syrup) has to be taken in front of a pharmacist every day, once a day. You get to take pills home, as you do not have a history of addiction, otherwise there is no way they would prescribe opiates for home use. The crackdown in the UK and the US due to the opiod epidemic is absolutely ridiculous, because all it does is push people like me to buy it from street dealers, where it's probably laced with who knows what else. There is a morphine extended release that works VERY well. It's called Zomorph, might be worth remembering if oxy's don't work. I've never wasted my time with oxy's. When I take morphine, I take zomorph as it does what it says on the tin. I'll send you a link that every opiate user needs, where you can calculate estimated doses between different types of opiates
Regarding withdrawals. This is how it works.... It will take Ur body and Ur mind (Ur opiate receptors) around 10 days to slow down on producing your own endorphins for pain, once your receptors are being filled with external opiates, in Ur case oxy's. That slowing increases over time. The longer you are on opiates, the harder the withdrawal is. So, once that happens, and you miss a dose, withdrawals will normally set in within 5-6 hours. You will feel anxious, a little short tempered, flu like, maybe sneezing, possibly starting with hot and cold flushes. By 10 hours of a skipped dose, all of that will increase substantially, but rls, joint pain, goose flesh and crippling cravings set in. By 24 hours of a missed dose, vomitting until you are dry retching will join in, as well as diarrhea. In fact, every orifice except your ears will be expelling fluid of some sort. This continues for the next 2-3 days, until around 72 hours after the missed dose. You'll also get palpitations, shivering, hot, cold, cravings, anxiety, crying, depression, light sensitivity due to opiates restricting Ur pupils... Withdrawal does the opposite, hypervigilence, hypersensitive skin.... Showering feels like needles, if Ur well enough to move, which is highly unlikely. I've had such bad withdrawals from opiates that there was no way I'd make it to the bathroom, so I had buckets next to my bed. You will also sneeze repeatedly, which will turn into retching, which sets off the diarrhea, all together, all at once. It is honestly vile, a total loss of dignity and just horrendous. After 72 hours, it starts to slowly subside and normally between day 5-7 these acute withdrawals are over. What I've just explained is called going cold turkey. I've done it many times, and EVERY time, all I thought about was dying. The contrast between the warm cuddle of using opiates, to the world of hell in cold turkey is truly a massive shift in a very short time, and no one should EVER do it if they don't know what to expect......after that post acute withdrawal symptoms (PAWS) start, and that can, and in most cases includes long term rls, insomnia, malaise, anxiety, depression, lack of enjoyment of previously enjoyable things, weight loss and a few other minor ones. When I get home later, I'll send you the medication dosing site, so you can check it out, it was created for nurses. I'll also send you another site regarding withdrawals and tolerance. If you ever decide to come off opiates, just remember, NEVER taper more than 5% of you total high dose PER TWO WEEK period for long acting opiates (extended release) and for short acting I'd personally drop it to 3% of whatever daily dose is every two weeks, and I say that because they have shorter half life, so are expelled quicker, making withdrawals noticeable faster. Reason it's done over two weeks is as I explained earlier, acute withdrawals take a week. So let's say your on 10mg 2x pd, so 20mg pd... Reducing by 5% means your dropping 1mg per day. It will take Ur body 1 week to process the withdrawal of that 1mg drop. Doesn't sound alot, but over 7 days, that's 7mg. As it's over a week, you shouldn't feel much, and if you do take paracetamol. But the 2nd week, when the withdrawal has passed, Ur body will regulate to the new lower dose, before you drop it another 5% and so on. This is a safe taper of opiates advised by the opiate addiction specialists. It's a long process, but relatively painless. I'll send u those other things later for you review for yourself, so u can see what I mean. Of course, if anything doesn't make sense, pls ask. Opiates are dangerous, and I think all of us who use (or in my case, when I fall off the wagon, abuse) them, need education around them. The very first time I was dosed properly on morphine, it felt like Christmas morning every day. Until my tolerance grew and I needed more for the same effect. If only I knew then what I know now! So I make a point of trying to educate folk about all things opiate, as no one warned me of the dangers, and that was 30y ago....
Everyone is different. Everyone has a different metabolic rate.
This accounts for varied experience of opioid power. I have a high metabolic rate ,and therefore cycle all medications quite fast. I wake up early during operations
Oxycontin 10mg should last 12 hours. And it does for some people, but for me ,I only get about 9 hours.
Oxynorm 5mg, should last 6 hrs, but i can stick it out for 7, which makes no sense.
So-- as I say- each person has to find out their own particular "ability" 🤔
That is very true. I tend to cycle drugs quickly too, and have also woken up on the operating table before.... Don't remember it, thankfully! But my surgeon told me afterwards. The timings I recognise for withdrawals, which aren't just from my own experience, but from many other people I've recovered with in rehab, and again as an outpatient. One very important thing to distinguish between the average medication taker, and those who are in addictive cycles, is that the addicts tolerance is constantly being pushed up, in an attempt to get the same euphoria from the opiate in question. Therefore, due to the significantly higher doses, the withdrawal will be harder AND because the addict knows the hell that's coming, psychosomatics set in, and we often feel withdrawal symptoms way sooner than we should. The average person following medication doses, and reductions, would never have to deal with that. Thankfully, as it's pure hell. Xx
Hi, sorry I'm probably wrong because I'm not a medical professional (although they seem clueless about RLS), Maybe there are different things.. who knows. I also suffer from severe RLS and have done for over 40 years, tried everything know to man. The only thing that has ever ever worked is opioids and tbh I've never ever heard of it not working on RLS.
I was on Oxycontin and pregabalin for 5 years. I still had very severe RLS, waking several times a night.I think it depends on the 'opioid'. Oxycontin doesn't help many of us as it has a short half life of 4 to 5 hours and can produce mini opioid withdrawals, the main symptom of which is RLS.
The first night I took Buprenorphine, I had ZERO RLS.
So I think Dav does have RLS, he just isn't responding well to Targinact and the withdrawals from dopamine agonists are still ongoing.
Oxycontin is supposedly 'long release' oxycodone, and is in Targinact. BUT, it isn't long release for most people and that was proven in the US scandal, where the Sackler family said it lasted 12 hours, but it was never tested or trialled. It's now been shown that Oxycontin doesn't last much longer than oxycodone.
Dear Jools, i thought i would tell you where I am up to following your earlier helpful posts.
I have gone back onto long release Targinact (5mg tablets every 8 hours but suspect i might have to increase to 4 tablets every 6 hours. I am also taking 300 mg/day of pregabalin. Ihave not yet had my iron blood test results. Can i ask please :-
1 I think I am suffering from mini opioid withdrawals as in between tablets I feel very weak and off balance. Is this a typical symptom and should then taking the next tablet remove the weakness (in legs mainly)?
2 Is it acceptable or normal to split the pregabalin into two or more doses or should as one fellow forum voice suggested one dose1-2 hours before sleep at my dosage?
3 i think you recommended earlier not to increase my pregabalin dose until i had settled on oxy dose and avoided any mini withdrawals. It that correct or can i say increase to 400 mg /day pregabalin whilst still in DA augmentation?
4 is the difference between Pregabalin and Gabapentin simply based on an individual's reaction to one or the other?
5 How long does it take approximately for a Targinact tablet to become active in the blood. Minutes or hours?
6 Has anyone ever connected RLS relief with antibiotics?
I apologise for the list of questions but hope you can give me further help on these?#
Hi Dav1. Being weak and off balance is not a normal symptom of 'mini opioid withdrawal'. If it has just started now, after you restarted Targinact, it could be your body adjusting to Targinact.
Those symptoms are actually more common side effects of pregabalin.
2. Most people take pregabalin in.one dose for convenience. Pregabalin is more easily absorbed than gabapentin. However, I used to split the dose to ensure a longer effect. I would take half the dose 2 hours before sleep and half the dose immediately before sleep. There's no hard and fast rule.
3. I would not increase pregabalin. You on a high dose AND taking 15mg Targinact. You should try to let both drugs take effect. It is still early days after stopping Pramipexole.
4. Pregabalin and gabapentin are the same class of drugs but they are metabolised and distributed by different routes. How one person reacts is different to another.
5. Everyone has a different metabolism. But Targinact should take effect within an hour.
6. We all respond differently to antibiotics. Some report RLS worsens, others that it improves.
Just to give you a time frame, most people do not get instant relief from ANY meds for quite a few months after DA withdrawal.
If raising serum ferritin above 100, preferably 200 doesn't settle your RLS within the next 3 months, you can ask your GP to switch you to a longer lasting opioid like Buprenorphine.
Dear Jools, Thank you for you , as usual, helpful and supportive reply. I think you are correct about the balance and it being more of a side effect of pregabalin. I think I might try to reduce the pregabalin as not sure if it is helping at moment?
My concern now is that I do not get relief from Targinact within an hour and the total 15mg per day is not giving me any significant relief at nights. Is it likely that my DA augmentation withdrawal is to "powerful" for Targinact to be successful?
I am awaiting results of ferritin blood test.
Do you think I am correct on above?
I must again thank you for your help and support and keep up the good work
Just to give you some background info.After over a decade on Ropinirole, I went through augmentation and withdrawal in 2016.
I was on 150mg pregabalin at night, 10mg Oxycontin at 10 am, 10mg at 10 pm and 5mg at 1am.
I had severe RLS from 8 until 10 pm every evening and walked up and down for hours. I would then manage to sleep from midnight, but would be woken at least 2 times every night with RLS. After 30 mins stretching and walking I could fall asleep again.
I would be free of RLS between 7 am and noon and that's when I slept.
This went on for 5 years.
I persuaded St George's to give me an iron Infusion in 2019, but it made zero difference.
I begged Professor Chaudhuri, the 'supposed' top RLS expert in the UK for help. He said there was nothing more he could do. I emaile Dr Buchfuhrer in the USA who was appalled at Prof. Chaudhuri's comment. Dr Buchfuhrer says 97 % of RLS patients can be effectively treated and get 8 hour's sleep a night.
Then, Shumbah posted about Buprenorphine.
I asked Prof. Chaudhuri for it. He was quite rude and dismissive. I changed my 'attitude' and re addressed my request as a simpering, pleading female.
He instantly changed and sent an email saying he had 'no objections if my GP agreed to prescribe'.
Not so helpful, because in many areas GPs are NOT allowed to prescribe Buprenorphine.
Luckily, I live where it's not 'red listed' and my GP prescribed it on a 3 week trial.
It stopped all my RLS the first night. I am 0/40 on the IRLSS, from 36/40.
So, it may take another few months for your dopamine receptors to settle and Targinact and pregabalin may help.
You could definitely increase the Targinact and take 5mg every 6 hours. If you reduce pregabalin, do it slowly to avoid withdrawal symptoms. You've only been on it for a short while, but still reduce slowly, by 25mg every 4 nights.
If your RLS doesn't settle in 2 months, then you can ask for an opioid with a long half life. Buprenorphine and methadone are the two most effective opioids.
The Mayo algorithm and the RLSUK website have all the doses and timings.
Jools thank you again especially for the frank and detailed background of your personal experience. Is Prof Chaudhuri still top man in UK for RLS?
Can you please briefly explain what the IRLSS scale is?
I am seriously considering going to a total of 20mg day of Targinact (ie 5mg every 6 hours). I have actually been on pregabalin a long time (2/3 years) and have at one point in my efforts to bring RLS under control been as high as 500mg and and as low as 25mg per day (under GP supervision). hence my questions about Gabapentin as an alterenative?
My GP has already refused to prescribe methadone but Buprenorphine hasn't been mentioned yet!
The International Restless Legs Group Severity Scale.You fill out the questionnaire and it determines whether RLS is mild, moderate, severe or very severe.
If you search for it you can download the PDF and complete it.
And, yes, Prof. Chaudhuri is still regarded as the top RLS doctor, which is why it's really important to get new NICE guidance, with more up to date experts involved who know about iron infusions and the benefits of methadone and Buprenorphine.
And who no longer prescribe Ropinirole/Pramipexole and Rotigitone patch.
Withdrawal can last months, but 20mg Targinact and 200 mg pregabalin SHOULD cover it. I think you should consider asking your GP for low dose Buprenorphine.
As I have mentioned before, I wasted 5 years on Oxycontin and pregabalin. Like you, my RLS was very severe.
Since switching to Buprenorphine, I've had zero RLS.
Dear Joolsg, I am still waiting for result of ferritin test (neurologist blames NHS!) but in the meantime my GP, who I am trying to bring "on board" with RLS, has persuaded me to increase my oxycodone/naloxone to 25 or even 30 mg (1x1x3 (5mg slow release) at bedtime) and to reduce my pregabalin (causes balance problems I think) to 100mg taken at bedtime. He is prepared to prescribe Buprenorphine but says i should stay with the higher dose of oxy for a week to see if side effects (mainly nausea and balance) settle and RLS is covered. What do you think please? I assume i am still at about 9 weeks in DA augmentation withdrawal? Kind regards
That sounds sensible. He is prepared to consider Buprenorphine, but first wants to see if increasing Oxycontin will help.A 3 week trial will show whether it works.
I suggest you download the RLS sleep and severity charts and fill them out over the the next month to show your GP. The RLS scale is in Pdf form in the NICE info on RLS.
Dear Joolsg, As usual a helpful reply...thanks. i have downloaded the two items and will complete before i see my GP again. In meantime do you think i might still be in DA withdrawal state and have you knowledge of Pregabalin causing poor balance symptoms? Regards
Pregabalin is known to cause dizziness and poor balance. I had terrible double vision & dizziness every morning.It does reduce after 2 or 3 months, so reducing to 100mg and taking at night should help.
DA withdrawal can last months for people. Everyone reacts differently and it depends how long you were on the DAs, the dose and your genes. Some people have zero withdrawal symptoms- but not many.
I would say the majority find their symptoms ease off after 6 or 7 months.
There are some people who NEVER get through withdrawal and they have to go back on the DA because their depression is too great.
In a few cases, anhedonia happens and Dr Andy Berkowski does mention a sad case where his patient ended his life because the DAs had permanently damaged his dopamine receptors and he was unable to experience pleasure in ANYTHING.
It is important to distinguish withdrawal from poorly treated RLS.
In my case, I still had severe RLS 5 years after stopping Ropinirole, but that was because I wasn't on the right treatment for me. You have to allow at least 2 months on a particular treatment to see if it works.
Good luck with the adjusted dose of Oxycontin/Pregabalin.
I was on a range of DAs for many years. Rotigotine was the last before augmentation. Fortunately I do n ot suffer from major depression only at 3am and no sleep.
I will certainly stick with oxy at the higher dose (25/30mg for a couple of months but will try to reduce the Pregabalin to ear zero.
The higher dose of Oxy has the following side effects:- feel weak, poor balance (may be the pregabalin?),increased urination and nausea on waking.
I have now received my ferritin test result and it was low only 42. The neurologist who requested this has asked my GP to prescribe "iron supplements" to achieve a level of over 80. From what I have read on this forum a better number is over 100?
I also understand that i should have been given another number TSAT(?) which i believe refers to "soft iron" ferritum? Could you please point me in the right direction on this
If it is relevant Iam now on 20mg/day oxy/naloxone and 150mg/day pregabalin.
The figure of 75 appears in NH S and NICE guidance, but US experts believe the levels need to be much higher for RLS patients. Kakally needs her level at 300.
As there's zero knowledge about RLS in the UK, it's not surprising that guidance is so outdated.
Start the supplements, but take ONCE a day, rather than as directed by your GP. Hepcidin will block iron absorption orherwise.
Most on here suggest taking iron once at night, with Vit C.
I have to agree with that comment re opiates, but coming from it the other way. As an opiate addict, when you STOP, the first symptom, besides yawning, running nose, sneezing and muscle tremors, is rls. Very odd if opiates properly dosed wouldn't stop it. After 30y of multiple cycles of addiction and wd, I can honestly say it's always worked. It's not now because I'm under medicated having tapered too quickly from 80ml meth to 18ml, hence the gabapentin.
They may need to titrate David, a person with low/no tolerance to opiates very slowly, to avoid the dry mouth, nausea, constipation, sweating etc. That may mean break through rls will occur. May be worth discussing with the GP, that whilst titrating to correct dose, if sleepers such as Zopiclone may be used to get restful sleep. That's what I ask for, and have done many times before. Works a treat.
Ah.. honestly I've never ever heard of it not working, especially at the dosage your on..Maybe there is someone else on here who has had your experience?
I’ve been on most of those drugs. But having opposite drug modification to you
Am transitioning from 2mg Rotigotine to 3mg daily and gradually coming off Pregabalin (nasty side effects). Am also v worried about augmentation as I think I’ve tried the usual drugs.
I know everybody is different but I was gradually prescribed increasing doses of rotigotine (1 up to finally 4mg daily patch before doctor decided it wasn't working for me but i am sure now that was when the seed of augmentation was sown so please take care. I agree with your comments on pregabalin but quite frankly the side effects from 500mg per day ( i was on that at one time) is nothing compared to augmentation. caused by DAs Kind regards
If you are having to increase the rogtigotine, that is a sign of augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
I'm a 79 year old male from USA and Iv'e had RLS for over 25 years. Doctors all listen but do little to help unfortunately . I had a pain doctor give me 200 mg of tramadol and it work really well for 4 years and then I moved to a different state and I couldn't get anybody to write a prescription for more than 100 mg of tramadol. After a year I got a doctor who actually knew about RLS and even though he wouldn't increase my tramadol ( it's an opioid and the USA is trying to get people off them even though they work when handled properly) he did give me 1 mg of pramipexole to go with the tramadol and for a year now it's been working great. I know everyone is different but it's been working for me. Good Luck !
1mg is double the FDA max for RLS and is likely to result in severe augmentation very soon.I'm so sorry the state you live in has stopped you getting tramadol and given you a dangerous drug that is no longer prescribed by experts.
Can you try to find knowledgeable doctor in your state?
I had very bad side effects from just 0.0088mg of pramipexole and so stopped it. Perhaps using it in combination twith tramadol is the key but Joolsg is a better judge than me.David
Ramipril is an ace inhibitor and should be fine. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Edoxaban is a blood thinner. Dipyridamole is also a blood thinner . You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...movementdisorders.onlinelib...
If you need an antidepressant trazodone is safe for RLS. It also treats anxiety and insomnia.
Gabapentin is not preferable to pregabalin but some find the side effects on one don't bother them on the other.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
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