User feedback of RLS drugs

[Lightning-Nl]

Restless leg syndrome is greatly effecting my sleep quality. I was prescribed Ambien to help with it, but it's stopped working very well. I'm going to talk to my doctor about changing up my meds the next time I see them. However, I'd like some user feedback and which ones helped people most who had bad RLS. My plans are to discuss three drugs with my psychiatrist - Gabapentin Enacarbil (Horizant), Pregabalin (Lyrica) and Requip (Ropinirole).

I've been on Gabapentin before and it definitely helped with my RLS, however, it's sporadic bioavailability and tolerance got bad after a while and it stopped being as effective after a while. So my thinking is; if I use Gabapentin Enacarbil it should be more effective since it's bioavailability is much higher and the plasma levels of Gabapentin raise to much higher levels.

Pregabalin is considered to be a more potent version of Gabapentin so this may work very well too. However, I hear it's more expensive and that Gabapentin Enacarbil is more effective on the long-term.

The more prototypical treatment for RLS are Dopamine agonists and precursors like L-DOPA. So I was thinking something like Requip would be effective. Since the Vyvanse I take every morning is effective at relieving pain associated with my RLS, it doesn't eliminate it completely (at least not anymore) and due to the fact that I, therefore, already have a tolerance to Dopamine agonists, it may not be as effective as the other forms of treatment. Plus I hear it's even more expensive than Pregabalin.

Maybe another drug that decreases the sensitivity of nociceptive nerves would be a good idea? I'm not sure, all I know for sure is the fact that I'm in a ton of pain all the time and I need something to stop it. Let me know what worked for you guys.

Thanks
SwampFox

 

[Lightning-Nl]

No one can input? really?

 

[Pill2Chill]

I've heard of tilidine being given for RLS, and I know from experience it's very effective for RLS, but it's a (pretty mild) opioid so it might be a little drastic. Also it's an opioid that's only Rx'ed in Belgium, and the german speaking countries.

It's effective though.. Other than tilidine I have no further experience with RLS meds, sorry.

 

[.:Holy::Toast:.]

I've heard of requip being used.
For me personally I just started on a routine of magnesium, potassium, and vitamin e supplements and it seems to have worked well enough

 

[Lightning-Nl]

I've heard of tilidine being given for RLS, and I know from experience it's very effective for RLS, but it's a (pretty mild) opioid so it might be a little drastic. Also it's an opioid that's only Rx'ed in Belgium, and the german speaking countries.

It's effective though.. Other than tilidine I have no further experience with RLS meds, sorry.

I don't really think an opioid is the way to go for my RLS, necessarily. If nothing else works, I'd be fine with being on one, but it's not my first choice. I'd rather try everything else possible before I get put on an opiate for RLS. This is main due to the fact that I don't want to have to deal with long-term physical addiction. I've withdrawn from opiates before and it's not something I want to do again.

Plus, tilidine isn't available here in the US (like you said). More than likely, I'd be put on Tramadol or possibly Codeine if an opioid was necessary.

I've heard of requip being used.
For me personally I just started on a routine of magnesium, potassium, and vitamin e supplements and it seems to have worked well enough

I've tried this before and it only very slightly helped. St. Johns Wart actually worked better than Vitamins did to be honest. Unfortunately, I became tolerant to it's effects very quickly though. I've also tried tons of other supplements as well. To name a few - Valerian Root, Melatonin, Chamomile Extract and Kava. Again, all helped in the beginning, but there effects wore off quickly.

I've also tried exercise (I've been going to the gym every other day for a couple weeks now) and I've really been pushing myself. I think it is helping me sleep longer, but it's definitely exacerbating my RLS. I'm having RLS symptoms even when I'm standing up now and this really solidifies the fact that I need to be on a med for RLS. In my opinion anyways.

 

[DaddyPhatSax]

Lyrica helped me a bunch. But it is very, very expensive. Plus, tolerance builds fast at least to the good feeling effects....therapeutic effects take a little longer.

 

[Alex000]

I might suggest, other than typical dopaminergic drugs for RLS, carisoprodol (brand name Soma in the U.S.); it is a GABAergic drug, and does have fairly certain sedative-hypnotic effects, however it can be good with certain types of pain, and I have a feeling nighttime RLS pain and related sleep deterioration would respond quite nicely to carisoprodol if dosed at bedtime. It does have a fairly high potential for dependence/addiction (some think more than benzo's, others think less, others think about the same), however I have read good things about chronic pain management with carisoprodol not losing really any efficacy even with longer periods of drug-therapy. But, I do know carisoprodol dependence can end up to be a hellish thing. Different people seem to respond differently to it, and even from dose to dose with the same individual there is notable variance at times in how it effects the individual. If you would try it, be cautious about not taking too much, and know how it effects you. Just a thought.

 

[Lightning-Nl]

Lyrica helped me a bunch. But it is very, very expensive. Plus, tolerance builds fast at least to the good feeling effects....therapeutic effects take a little longer.

I'm not sure what my psych would think about putting me on Pregabalin/Gabapentin when I take benzo's as needed, and Ambien every night. Both of which would be potentated (alot) by Pregabalin/Gabapentin. So I'm not sure he would do that. He'd probably be alright with taking me off Ambien and putting me on Pregabalin/Gabapentin instead, but then I'm pretty sure I'd still have sleep latency issues. I'm not sure, I'll ask him the next time I see him.

My prescription for Ambien really helps eliminate my RLS entirely, but it only lasts 5 hours at most. Then I wake up with excrutiating pain in my legs. He said something very interesting the last time I was there though. He said he's done a combination of Ambien and Starnoc before. Not together of course, but he said when he's had situations where Ambien CR didn't work (it actually worked at keeping me asleep all night, but then I'd wake up and feel incredibly ill the next day. Neither of us understand why, when Ambien instant-release didn't do this)

Anyways, he said in the past he's done Ambien to get someone to sleep, and then when they wake up 5 hours later, they take Starnoc and that puts them back to sleep. What would be nice about that, is the fact that Zaleplon's half-life is only an hour or so. So I'd sleep another 3 hours and wake up. Exactly the right amount of sleep. I'd very much like to try this, but he want's me to try Eszopiclone first.

He gave me samples of Lunesta when I was there last Friday and while Eszopiclone kept me asleep, it still took me quite a while to fall asleep. The one good thing about it was the fact that I slept nearly all night. But it's effects were like Ambien, but without the very intense, drunk-like sedation.

I might suggest, other than typical dopaminergic drugs for RLS, carisoprodol (brand name Soma in the U.S.); it is a GABAergic drug, and does have fairly certain sedative-hypnotic effects, however it can be good with certain types of pain, and I have a feeling nighttime RLS pain and related sleep deterioration would respond quite nicely to carisoprodol if dosed at bedtime. It does have a fairly high potential for dependence/addiction (some think more than benzo's, others think less, others think about the same), however I have read good things about chronic pain management with carisoprodol not losing really any efficacy even with longer periods of drug-therapy. But, I do know carisoprodol dependence can end up to be a hellish thing. Different people seem to respond differently to it, and even from dose to dose with the same individual there is notable variance at times in how it effects the individual. If you would try it, be cautious about not taking too much, and know how it effects you. Just a thought.

I've been very curios of muscle relaxants. I'd very much like to try something like carisoprodol or maybe even baclofen. If it doesn't give any euphoria, or very little euphoria, then I'm sure I'd have no addiction problems with it. I'd more than likely binge on it for a couple days like all my other meds, but I think I could keep that incheck since I've been able to keep my Ativan use in check.

Ambien is the only thing I'm really abusing prescription wise. I love it, but I know it's probably going to cause problems for me down the road. I'm debating whether or not I should tell my psychiatrist about this.

Anyways, anyone here try the anticholinergic muscle relaxants? I believe they're ganglionic blockers (antinicotinic).

 

[frontbluntt]

Clonazepam... strong muscle relaxant qualities as well as typical benzo sedative properties to put you to sleep.

 

[Lightning-Nl]

Clonazepam... strong muscle relaxant qualities as well as typical benzo sedative properties to put you to sleep.

Sorry I should have mentioned - the point is to find a drug that I can take everynight that won't cause awful physical addiction.

 

[MagickalKat777]

Sorry I should have mentioned - the point is to find a drug that I can take everynight that won't cause awful physical addiction.

Well Lyrica and Gabapentin enacarbil are out then too since both pregabalin and gabapentin have a tendency to evoke a rather strong physical addiction and rapid development of tolerance. GBP enacarbil hasn't been out long enough to know about but being a pro-drug for GBP with higher bioavailability and extended-release action, one could logically assume that it would be as addictive as GBP itself.

Have you looked into medical marijuana or possibly made a case for Marinol? MMJ is probably the most effective RLS treatment out there. I have many friends that experience near total relief of RLS from MMJ.

Outside of that, Trileptal and Tegretol have been shown to be effective (with Trileptal having far fewer side effects than Tegretol), Mirapex (pramipexole) is as effective as Neupro with fewer side effects, Rozerem (ramelteon) is also effective for RLS and would replace your Ambien and give your psychiatrist less pause about prescribing other things.

Also, be careful with baclofen. Just because you aren't getting high from it doesn't mean you won't get hooked on it.

Melatonin itself, Remeron, and a number of other treatments are out there as well.

 

[Lightning-Nl]

Well Lyrica and Gabapentin enacarbil are out then too since both pregabalin and gabapentin have a tendency to evoke a rather strong physical addiction and rapid development of tolerance. GBP enacarbil hasn't been out long enough to know about but being a pro-drug for GBP with higher bioavailability and extended-release action, one could logically assume that it would be as addictive as GBP itself.

While that's true, Gabapentin/Pregabalin withdrawal would be a cakewalk compared to Clonazepam. I get bad phsyical withdrawals when I take Ativan for more than 5 days straight. I can't imagine what a more powerful Benzodiazepine would do to me, especially if I was taking it everyday. Don't get me wrong, I'd love the high (so would everyone) but the negative's outweigh the positives in that situation where as the positives outweigh the negatives of Gabapentin/Pregabalin.

Have you looked into medical marijuana or possibly made a case for Marinol? MMJ is probably the most effective RLS treatment out there. I have many friends that experience near total relief of RLS from MMJ.

Lol there's no way my psych would give me Marinol. Also, I wouldn't dare ask for it either.

Besides that, I've had the opposite reaction with Marijuana. I've tried using weed for anxiety/sleep/RLS before. It help with none of those, in fact, it exacerbated all of them. Awful anxiety from weed, it puts me to sleep but as soon as it wares off, I get the worst rebound insomnia I've ever seen before. No one else I know of get's this, but the "hangover" I get from weed is almost no different than antipsychotic malignant syndrome - horrible stiffness of my muscles (which exacerbates RLS even further), horrible brain fog, horrible everything.

Weed is one of the "funnest" drugs out there, but I can't see it being used for anything I would need it to work for. Maybe if Marinol was CBD instead of THC it would work a fuck ton better - but it's not. Plus, I don't think it would be all that great of an idea when I already have psychotic symptoms.

I appreciate the suggestion, I just don't think it would be the right approach for me.

Outside of that, Trileptal and Tegretol have been shown to be effective (with Trileptal having far fewer side effects than Tegretol), Mirapex (pramipexole) is as effective as Neupro with fewer side effects, Rozerem (ramelteon) is also effective for RLS and would replace your Ambien and give your psychiatrist less pause about prescribing other things.

Also, be careful with baclofen. Just because you aren't getting high from it doesn't mean you won't get hooked on it.

Melatonin itself, Remeron, and a number of other treatments are out there as well.

Tried Remeron - exacerbated insomnia, I take 3mg's Melatonin every night - it has little effect on me. The other meds you mentioned, while I haven't tried them yet, I'm all but certain would be as ineffective as everything else I've tried.

Glad you mentioned Mirapex and Neupro though. I didn't realize that all dopamine agonists can exacerbate psychotic symptoms. I guess that rules out those.

I guess the only thing left would be a ganglionic blocker. These are antinicotinic muscle relaxants that literally stop the muscles from becoming excited because they stop ACh from being able to bind at Nicotinic receptors. I don't know if they're addicting or not, but I would guess so. Ever heard those stories about a mom who comes home and finds that her son is fine, but can't move at all because he took some of her muscle relaxers in order to get high?

Those are antinicotinic muscle relaxants. I'll look into those a bit more. But otherwise, I'm totally fine with Baclofen, Gabapentin, Pregabalin physical addiction.

 

[PotatoMan]

Didn't read any posts but the OP. I don't suffer from RLS but one time I t

 

[MagickalKat777]

Damn SwampFox56, I hope you find something that works. That sounds absolutely horrible.

I did do some research on ganglionic blockers. They sound like more trouble than they're worth from the examples I found. I would say that you're probably right about GBP and PGB... I'd avoid the Baclofen though. That's just me. I have no direct experience with it but I've seen and heard more about horrendous addiction and withdrawal with it than GBP or PGB and PGB is a hell of a lot more common than Baclofen.

 

[neversickanymore]

Lyrica helped me a bunch. But it is very, very expensive. Plus, tolerance builds fast at least to the good feeling effects....therapeutic effects take a little longer.

+1 or neurontin

 

[Laketahoe]

I've tried Lyrica 2 separate times to help RŁS but it did not work very long. Immediate relief which lasted short time and there was significant weight gain each usage period.

 

[Keif' Richards]

OP, I think you hit the nail on the head in regards to your intuition about gabapentin. RLS is usually the worst when you lay down to go to sleep and with a drug like gabapentin, not only is the bioavailability sporadic, it takes hours to actually feel the full effects. A lot of us cannot time exactly when we're going to sleep to such a degree. For both of these reasons, pregabalin is a great medicine for RLS and general Akathisia. I don't really experience RLS or Akathisia outside of opioid withdrawal, so I imagine my case could be a little bit different than yours.

I was prescribed pregabalin and I'm a known drug-addict, so I can't imagine others would have to tough of a time getting it prescribed, especially for legitimate need.