I also dislike mysteries. I like understanding. The other day a member posted that the first time he ever had RLS in his 30 years of life was shortly after he went cold turkey off of Pregabalin, which he was taking for other reasons. It absolutely has the tendency to do this. I will post case reports of other people later. That alone tells me it's messing with our dopamine transport system. Numerous people on the net report new-onset RLS after stopping Pregabalin, even with tapering. Sounds like it generally resolves in weeks or months, but in our member's case he was prescribed ever increasing Ropinirole for a year. Getting back to my point, it sounds like Pregabalin is a D1 antagonist just like Prami...if I'm reading the below articles correctly. If I am, that's bad, very bad. As a matter of fact, let's just consider every RLS med to be a D1 antagonist. There's horror stories, just like with the DAs, of withdrawal from Lyrica.
All the studies show that pregabalin, gabapentin and opioids are potentially addictive.
This has been previously known for opioids for a long time.
The potential addictiveness of the alpha 2 delta ligands has only recently been recognised e.g. as reported by the FDA.
These studies explain WHY the drugs can be potentially addictive. It's because of their effect on dopamine activity in the brain's reward system.
This was known for opioids previously.
The studies make no mention of the drugs' effects on dopamine activity in the parts of the brain associated with RLS. Therefore any effect on RLS can only be inferred.
It has been observed that RLS like symptoms occur when alpha 2 delta or opioids are withdrawn. These studies may then explain why this happens.
Withdrawals should settle down after a while however, so it might not be a good idea to treat the withdrawals with a dopamine agonist. Not my call.
If RLS symptoms persist long after you'd expect withdrawals to have faded then this suggests primary RLS previously undiagnosed.
One of the studies offers an explanation for the weight gain some people experience with the ligands. It's the coincidental effect of the drugs on dopamine activity in the reward system.
Implications for RLS treatment.
Both ligands and opioids are known to be effective for RLS. Opioids more so than ligands.
I believe it isn't entirely understood why opioids work for RLS. They do increase dopamine activity in the reward system. Whether this is the explanation isn't clear.
This is because in RLS dopamine levels in the parts of the brain associated with the condition may already have raised dopamine levels. Raising them further with levodopa or DAs raises dopamine levels further and leads to augmentation. Opioids, (apart from tramadol) aren't known to cause augmentation!
The ligands are used for RLS because of their glutaminergic effect not dopaminergic. Any dopaminergic effect on the parts of the brain associated with RLS is a side issue. It may explain however why augmentation can occur with the ligands even if rates are lower.
Does this mean ligands and opioids should not be used for RLS for people definitely diagnosed with RLS.
Not at all. Their use should not be avoided because of potential addiction. These drugs have to be misused for addiction to occur.
DAs can also cause addictive behaviour as they can also affect the reward system.
Avoiding all of these will currently mean there is no really effective drug treatments for severe RLS left.
Whether an individual on balance decides pregabalin is doing them more harm than good is a personal decision.
The FDA make an interesting comment about this.
The issue which often occurs when a drug fails is where do you go next?
Addiction is not my concern. My concern is that today's safe alternative (Pregabalin, Gabapentin) to the terrible, horrible DAs, is tomorrow's DAs....in disguise.
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The whole point of switching from the DAs to Opiates and the Gabas was to provide relief, even if it's with addictive substances, as long as they didn't make things worse like the DAs did - meaning downregulation of the D2s and upregulation of the D1s. If the opiates and the gabas do the same then what's the point of switching? Maybe it's better to do a low dose of each and best in class.
Hidden well said this is what scares me start Pregabalin.But as Elffindoe said what other treatment is left? What’s the alternative. Just lying down and I can literally feel worms travelling up my veins and calf’s.
I really want some relief so bad, but this fear since the augmentation of Ropinorole has scarred me for life. It’s was traumatic. I can’t go through that again, but then what do I do, carry on like this.
I am 100% convinced starting Pregabalin in 2018 and stoping in 2020 kicked started my severe RLS, and the Ropinorole definitely did not help.
In hindsight if I didn’t start the Ropinorole, I think I would have been in a better place right now.
It appears that any drug which alters dopamine activity is going to have some adverse effects. It depends on whether these outweigh the benefit, as the FDA say.
The adverse effecys might include the effecys of withdrawal.
I haven't read much myself about gabapentinoid withdrawal, but anything which causes chemical effects on the brain, as others have said, will have withdrawal effects which are sort of in the opposite direction.
E.g. withdrawals from drugs which treat seizures can include seizures. Withdrawals from drugs which cause euphoria can include anhedonia, i.e. not being able to enjoy anything.
The question is, are withdrawal effects permanent.
So, if a gabapentinoid is taken for anxiety, nerve pain or epilepsy and is then stopped RLS like symptoms can occur. This may be temporary, but may also be hard to bear, especially if we hadn't anticipated the effects.
It may be too easy to impulsively jump into taking other drugs to control the RLS like symptoms without giving withdrawals time to settle.
However, as I may have written before, if RLS like symptoms persist after you'd expect withdrawals to disappear, then it's likely you may have had RLS before taking the trigger. I definitely had mild untroubling RLS for decades for years before severe symptoms were triggered by antidepressants.
In the case of pregabalin, I know little about withdrawal in respect of whether ALL effects fade in time OR if some don't which infers the drug has caused some permanent damage.
Opioids, I do know, can cause permanent damage in some cases. The damage is to the reward system and "ex" opioid users can suffer permanent anhedonia.
I think the same can occur with alcohol misuse.
When suffering any distressing condition e.g. anxiety, it's always a balancing act as to whether the benefit of a drug will be outweighed by it's consequences.
I guess on the one hand, some people reading about the drugs are so overwhelmed by "potential" risks that they avoid them and hence never experience the benefit. You could say this is observed on this site with members desperately searching for "natural" alternatives.
Not that I'm wholly against this.
Others might impulsively take a cocktail of drugs or dubious alternatives without any apparent fear, ( or sense!).
A middle ground is needed.
Something that appears to be commonly disregarded is that people have the right to choose what treatment they have. This is a fundamental right established after WWII in Nuremberg.
In addition when choosing, people have the right to be fully informed.
In Europe, the UK and US at least this is LAW.
In the UK, the acronym for this is BRAN
For any treatment -
What are the BENEFITS?
What are the RISKS?
What are the ALTERNATIVES?
What happens if NOTHING is done.
This applies to ALL treatment. Hence if you were to be diagnosed with RLS and the Dr only mentions a Dopamine Agonist and gives no information about the risks nor about iron therapy, nor about gabapentinoids, nor about what might happen if you take nothing, they are acting ILLEGALLY.
The same applies if a Dr advised pregabalin for anxiety.
That article doesn't intimidate me somehow. It wouldn't stop me from taking the Gaba if that was my chosen solution to RLS. You're pulling us into the weeds. I'm laser focused on those receptors. You should be too, otherwise your talents are wasted.
I want to find the best of the worst based on all available info - both scholarly and anecdotal, come up with some type of algorithm, and move on. I realize that not all doctors will go along with prescribing what our members want, but that can't deter us. I also realize that even if members get what they want they will need assistance sometimes with the side effects.
Get members on here comfortable with the least amount of downside and then concentrate on up-regulating the D2s and/or down-regulating the D1s. Otherwise we just keep going around in circles.
To me it makes sense to use those drugs that are given when people are withdrawing from heroin and opiates, only use them in the first place, rather than the last ie methadone, buprenorphine. And now we know why they're used - because they're equal time agonizers, similar to Neupro, and shouldn't do as much damage as Prami, Oxy and Preg. Pregabalin is not used in an addiction clinic, except to treat the RLS that comes with withdrawal. They give it side by side with the buprenorphine not realizing buprenorphine will kill two birds with one stone and thus possibly prolonging the agony of the patient by failing to know this fact.
Do you feel as though you have augmented on the Gaba? It seems to me that people need ever increasing doses of Preg and Gaba in a relatively short period of time whereas it sounds like people can go years, if not decades, on the same amount of methadone and buprenorphine and Neupro too - if they do drug holidays. What more can we ask than that?
RLS is not like any other disease or condition. It's stealth, it moves in millimeters rather than inches and feet. Diseases like Crohns are big and loud and in your face and can consume your entire intestinal tract over a period of time and you need to make big moves to beat it back. Our DAT can be "adequate" for most of our lives such that we hardly ever get symptoms and even as we get into later stages of life it will be adequate all day long until oh about 9 or 10 or 11pm. And even then, when you stand up, it disappears. So come on, give me a break, step away from doctors' hippocratic oath and even addiction and withdrawal and the side effects that comes with the RLS drugs and come up with a way to shore up our DAT. Some people augment on the DAs in as little as 5 days and a relatively small amount at that. You know there's gotta be a way to do just the opposite in the same amount of time with the same amount of a drug. Right? Please say yes, it's my bed time.
I have found cases of new on-set RLS following withdrawal from the partial agonist, BUPRENORPHINE. If you search the name of any given drug along with “RLS” and “reviews” you will see patient satisfaction. The highest marks go to Neupro, BUPRENORPHINE and methadone. The point is, once someone achieves a certain amount of comfort from any of these drugs they probably need to actively look for and try other avenues that will at least stave off the need for ever increasing doses. That was the point of my last post. That’s the real need in the RLS community right now -finding ways to counteract the tendency of RLS meds (all of them) to down-regulate the DAT without forfeiting the efficacy of these drugs. As you know some people have achieved this by some combination of fasting, exercise, special diets and supplements with an emphasis on fasting/severe calorie restriction.
50% of people recovering from opiate addiction experience RLS and most of new-onset. And it's the last symptom to go. That tells me the opiates downregulate the living you know what out of people's dopamine receptors, even people who probably started out with robust dopamine receptors. Once again, if they all mess with our dopamine transport system then we need to do low dose of each and best in class.
Opioid withdrawal is known to cause RLS. It's one of the reasons some people try to get clean but fail. Similarly, pregabalin can have the same results. Elffindoe has given the more detailed explanation as to why.I didn't like the side effects of pregabalin but they did settle after about 3 months
I had read that fast withdrawal from pregabalin caused bad withdrawal so I spent 9 months reducing by 6.25mg every 2 weeks. As a result I didn't notice any withdrawal symptoms.
I was on Oxycontin and taking the pregabalin initially to counter opioid induced panic attacks.
All drugs for RLS have serious side effects and serious withdrawal symptoms but we're stuck between a rock and a hard place. After over a decade on Ropinirole my receptors are probably fried and my RLS is very severe. It really is a case of drugged up or death. That's why I strongly believe all RLS patients should try to raise their serum ferritin before trying any medications.
And any withdrawals should be done as slowly as possible.
I’m out of my depth. These articles might as well be written in Chinese. Up down good bad D1 D2 and what about 3,4 and 5. I’m a one-trick pony and I need to stay in my lane.
This has been a stuggle of mine. Am I addicted to pregabalin? Probably, I am certainly dependent on it. My medication ran out and the doctor and pharmacy went out of their way to fill it in time. I certainly don't abuse it, but I have thoughts...
I don't like to take pregabalin, but right now I have enough issues to worry about.
This is an important topic, thank you for bringing it up. Hearing everyone's experience on Pregabalin withdrawal would be very helpful. How long were people on it and what was the withdrawal experience?
Been on it for 1.5 years, 125mg daily at night. Reduced exactly like Joolsg. I get moody when the dose is changed sometimes, but it passes mostly when I stick to one dose. Don't come down fast--you will feel it. My life is much better for this drug and I don't like to think about what it would be like without it as I have tried everything (except Kratom). Very important to learn and avoid food/drink triggers.
I had bad withdrawals from Tramadol after 7 years. Then tried Ropinirole. Wasn't on that long enough to get too addicted, about 6 months. I went on Pregabalin as I came off Ropinirole. Have been on Prag. 50 now for 8 months, I have no RLS twinges. I am free right now. So far am considering doing every other day on the Prag. to see if it works. So far no need to increase the dosage. I must be an unusual case but I'll take it. I can't live with the horrible RLS I had before.
1Ginge1 I’m really anti medication but the approach you have taken in regards to pregabalin is good. Not increased from 50mg. Is that daily or 3x day = 150.
Going from everyday to everyother day does sound like a good idea. But please inform yourself of the risks. I’m not too sure, but I’m sure other members will tel you.
I’ve been on a DA and it didn’t end good. But like I’ve been told what’s the alternative? To carry on living like this. It’s reassured me that you benn taking pregabalin for 8months and havnt increased and there are no symptoms.
I use 50 mg. 2 hrs. before bed once a day only. So far Pregabalin is doing the job. With RLS you never can be sure of anything. I also got two rechargeable leg massagers that are wonderful. If my legs get tingly after going to bed I put them on. I usually go to sleep before they turn off 20 minutes later. Got them at Amazon.
Since stopping pregabalin in Feb 2020 I started to have severe RLS symptoms hence being hesitant.
Since suffering augmentation from Ropinorole and coming off them in April 2021. I’ve been managing my symptoms without medication. Finding triggers, increasing iron, changing diet, listen to other members on here.
However the last 10 days have been awful, including last night.
I don’t see any alternative anymore, but I can’t seem to shake this fear of medication.
I currently take tramadol 50mg if and when required. As I have had ten bad nights I’ve took it night.
Apart from first 2 nights it hasn’t made a difference at all.
Sorry for moaning on lol.
Seeing that you have not increased from 50mg and it’s giving you relief is ever more edging me to consider it as a option.
My partner is going through withdrawal from pregabalin at the moment and he is in a really bad place. He was prescribed it during withdrawal from miraprexin after very rapid augmentation and it never worked for him. The Dr kept increasing dose until he was on 600 mg a day. He is now down to 300. He jerks and spasms 24/7 has permanent rls symptoms and hasn't slept for so long I have no idea when he last got more than 1 or 2 hours. He is beyond desperate at this point
Someone will be on here shortly to help you. Feel free to look at my Profile and my posts and replies. I am a one trick pony and that trick works best for people who are drug-naive. If your partner were my partner I would twist the doctor's arm for a 2mg patch of Neupro and buprenorphine sublingual 200 mcg and start with the ferrous bisglycinate which is explained on my profile page. I want my partner out of hell, but not with the same type of drugs that got him there in the first place. My research has told me these two drugs are the best choices, as well as methadone. Once your partner is comfortable, for a good long while, you can begin the ultra slow process of tapering the Neupro patch and looking at things like nightly fasts and supplements to tamp down the RLS.
I see his TSAT is high. Not ridiculously so, but still. Might be worth repeating. Time of day blood was drawn can affect it I believe as well as certain drugs. You might want to get a "stability ball" for him to sit on. Should be slightly deflated. People swear by it to allow them to sit and watch TV. Whenever the body senses imbalance, such as when we stand and walk, dopamine will be released to coordinate movement. I don't care if he has to drape himself over the ball, he needs to get some rest.
Thank you for your replies. Our Dr has more or less given up, says he needs a neurologist, he's on the waiting list but that could be years. We will pay if necessary but want someone who knows something about rls or it's all a bit pointless. I see you looked back at my previous posts. We seem to be going round in circles here. We got a repeat blood test done because of the high tsat result but just got results back and Dr didn't get right test done, no tsat result at all.
Really not sure we can ask for another one at this stage.
He stopped taking the iron after high tsat result so still don't know if he can start again. Ferritin up to 76 now tho which is good. I've seen all the posts about buprenorphine but don't think that will be possible without neurology consultation
Not sure how long your partner can stand this. Have you thought about going to a hospital on an emergency basis. I caught flack for recommending Neupro to you but it’s a stop gap measure and one that your regular doctor would likely be more willing to prescribe until you see the neurologist (and refuse to leave his office until he prescribes the buprenorphine). Neupro isn’t a full on agonist like Prami, it’s a partial agonist and I for one would choose it over Lyrica. But that’s me, not you, and not most people on here.
However, reading the overall reviews on Drugs.com show an 8.1 approval rating for Neupro and 6.3 for Pregabalin. I think time will catch up with Preg and RLS voices will be heard and it will no longer have a big thumbs up. By the same token I think Neupro (low doses) has gotten a bad rap because of Prami.
I was on pregabalin for a year for back/nerve issues. I withdrew carefully over months and didn't suffer any problems and felt sharper and more aware as a result. However I felt that my RLS had changed from something vague where I regularly felt restless and had to get up at night to a more assertive form where it woke me more frequently and when I did wake I was very twitchy. It's difficult to know whether this was increased awareness, or the symptoms getting worse, or maybe I'd been too preoccupied with back issues to take much notice of the RLS but it was after pregabalin that I realised I had a different issue and came to this forum. Co-incidentally my tinnitus also seemed to get worse after pregabalin as well. It's one of those things that's difficult to be sure about as you can't easily measure it.
Thank heavens you didn't suffer. I see you're taking iron. I hope you're taking it as per my Profile page, lest I primal scream. If you're going to take iron you have to take it this way or just don't talk to me :). I also hope you stop eating mostly by sundown and fast until morning. These things are too easy and too proven on this site not to give it your best shot.
I don't think you can conclude that pregabalin is a D1 antagonist from what you have written. It is not surprising that a few people who come off pregabalin end up with RLS since pregabalin helps with RLS. They probably had mild RLS and didn't know it even before they went on it for different reasons. And why advise anyone to start on the neupro patch if they haven't already been on a DA since they will only have to withdraw from it and experience withdrawal effects.
No, the article isn’t definitive, but quite clearly implies that it likely is a D1 antagonist and the last article that Oxy down-regulates our D2 receptors. The whole point of switching from DAs to these substances was to get relief, even with addictive substances, because at least they don’t worsen our already lousy dopamine transport system. I’m beginning to think that’s an incorrect assumption especially given the extraordinary number of people who develop RLS for the first time after stopping treatment with Preg and Oxy. Not knowing is what got us in trouble with the DAs. This discussion here is for severe intractable RLS caused by the DAs, not for newly minted sufferers with mild to moderate RLS.
I was on pregabalin in 2018 150mg X3 daily (450mg). For 2 years. No prior RLS.I stopped pregabalin cold turkey in Feb 2020 (in hindsight, not something I would ever recommend).
And since been suffering with severe RLS.
Maybe I’m wrong, but I truly believe if I did not start pregabalin in first place. I would not be here on this forum.
Being said I have primary RLS which was undiagnosed and stopping pregabalin triggered it off.
Am I wrong to believe that In fact the pregabalin caused me to have severe RLS. And stopping cold turkey did not help too.
I believe we are all individuals, and individuals react differently to different medication.
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Worsening symptoms on Rotigotine
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Anyone care to interpret this article?
And now for the good news
