Restless Legs Syndrome (RLS) Discussion Board

Madmom, do you have symptoms all day? I would find it hard to get full relief with just 10mg of Oxycodone at a time. I would need more like 15 or 20 mg in one go at bedtime and then maybe another 10 later in the night if I was relying solely on Oxycodone for relief. But I only get symptoms badly at night so tend to target meds to that. It probably is wise to limit daily intake to max 30 mg but maybe re-organise the time/dose? Hope I'm making sense here.

Also it can be difficult to get to sleep using opioids due to their alerting qualities. This is a problem for me. I take 50 - 100 mg Lyrica to overcome that but much more effective for me is marijuana. Unfortunately it's not legal here ...

Finally, you may already be aware but in addition to their notorious constipating effect, taking opioids can affect libido and in particular impede your ability to orgasm. Something to look out for which I was unaware of until a kindly sole on here pointed it out to me.

I mean 'soul'; ie not a flat fish.

Are you still weaning off ropinerole?

Hi guys ("guys"! haha)
I agree with legsbe, 10 mg, if that's all you're taking, is probably too small a dose, Madmom. But are you taking 10 mg 3x daily or once daily? If 3x and still not enough relief, you might need to move to a different opioid, maybe even methadone. Even if you don't switch, you probably could use an extended-release formulation, which would last more like 6 hr instead of the 3 or 4 you get with the regular stuff (though they say 12, it isn't actually effective that long - for me, at least).

Is there anything else you can do to relieve your symptoms? Avoid coffee, avoid food triggers (if you know of or suspect any), take iron pills (with vitamin C), take vitamin D? The last two have been tied to increased severity of WED/RLS, so they are definitely worth trying.

Do all you can, and give this oxycodone a fair trial, but do get back to your doctor with exactly what's happening. (Nice you can email her! That's seriously frowned on where I live!)

I have RLS all day. I'm pretty immobile from the MS (balance and a dead right leg). I was taking 5mg oxycodone for my back pain and it used to stop the RLS. Through the taper off the ropinirole, it sometimes was still enough until about midway through. Then I had to take 10mg. And, it was liveable.

But something changed - not my diet. I avoid simple carbs completely (and some other carby foods) because I know they set the RLS off. I only drink water. Other than 2 nights of ambien, I haven't changed any meds either. I take 4000IU vit D and have for a couple of years.

Glad you mentioned the iron - I'd forgotten I'm supposed to get it tested although the sleep doc thought it was ok based on my last test (90?). She wants to do the transfer rate test, too - or whatever it is.

I'm taking a total of 30mg oxycodone a day (although I took probably 40mg a day for the worst of the taper for a week or so).

The sleep doc (who, btw, is not the same doctor as the pain management doctor who wanted me to try LDN for my back pain) mentioned methadone as an alternative. I have an appointment with the sleep doctor in early March but I'm going to try to get in earlier.

I used to take oxycontin for my back pain - it never lasted longer than six hours for me either. Lyrica is on the list of possible alternatives but gabapentin makes me suicidal so it's really low on the list.

What would happen if I tried pramipexole again, for just a couple nights? It did work completely for three weeks?

Thanks all!

Poor, poor you, it sounds like you at going through a terrible time. I wouldn't like to say categorically about pramipexole but there certainly at people on here who take it for a few days at a time then stop to avoid augmenting. I have wondered about doing that myself. I would seriously consider it in your situation. Even to get relief for the days you are on it. It does sound like you have exhausted the usefulness of Oxycodone (incidentally I too find oxycontin effective for max 6 hours). Maybe methadone is the way to go. You must be feeling desperate but do keep on mind that there is bound to be a more effective treatment out there for you.

Should have said also, It is well worth upping your iron levels - fingers crossed that it helps.

I do not find Lyrica helpful for my rls - just for overcoming sleep and that seems to be the case for most with bad symptoms. I also found it affected my well-being badly at a higher dose - I know it is slightly differently formulated (pregabalin rather than gabapentin) but I think it breaks down to the same compound once ingested. I would be cautious of it if it caused depression previously.

Maybe she will comment later today, but Ann (ViewsAskew) probably augments on pramipexole faster than anyone here, yet I believe that her current treatment plan is based on alternating an opiate for several days with several days on pramipexole. She has been able to avoid augmenting as well as developing opiate tolerance by doing this.

As for pregabalin (Lyrica), it is chemically different from gabapentin. It is Horizant that breaks down into gabapentin once in the blood stream. Pregabalin has a reputation for more side effects than gabapentin, but since everyone reacts differently to these meds, it might be work a try - especially if you can get samples from your doctor since pregabalin is much more expensive than gabapentin.

As for the oxycodone wearing off, it would definitely be worth giving methadone a try. Methadone is chemically quite different from the other opiates and has a half life approaching 2 days. That means that it doesn't wear off as quickly. Methadone also has a bit of interaction with the dopamine receptors in the brain, so it might even help you to reduce your Neupro dose.

Thanks for the input re pregabalin, methadone, and pramipexole. I think I'm going to try the pramipexole tonight. I'm a bit concerned about the oxycodone amounts I'm thinking I need.

Last night was slightly better but I took a crazy cocktail of 5mg oxy, 1mg clonazepam, .25 trazadone, and 10mg baclofen at 10:30pm. Fell asleep after midnight, woke at 3am, took 5mg oxy and .5mg clonazepam and slept until 7:30am. I'm going to end up an accidental overdose statistic.

Does anyone else wake up with a weird feeling in their stomach after taking oxycodone (or maybe it's the trazadone) at night? It's not nausea or anything like that - just kind of a weird emptiness?

No I can't say I've experienced that feeling and I have been on 30 mg of OxyContin per day in the recent past.

Beth, I've been missing your presence here and so very glad you're back! Sorry to hear about your parents. Hugs to you.

Thanks yawny

Madmom, some docs would say ferritin of 90 is low for a WED/RLS patient. It's hard to say. I try to experiment with myself but I can't get the doctor to order ferritin tests at the right times! I am maintaining at about 120 by taking 3 pills a day of 65 mg elemental iron each. If I decrease that, I feel increased symptoms - it used to be within a day or two but now it takes about a week. And about that long again to get my levels up after I resume the 3 pills. (I'm assuming my levels are going down then up - - I can't get them tested at the right times!)

Re wierd emptiness - only hunger!

It seems iirc that pramipexole caused you to augment within 3 weeks - so that would be beyond the upper limit of how long you can safely take it. You could try a 2 or 3 day rotation, or 1 week on and 1 week off. Whichever you do, it might be difficult to resist taking it on the off days if you don't have something equally effective to take then, unless you can keep a memory in your head of the horrors of augmentation.

I do something like that with pregabalin and long-acting levo-carbidopa (Sinemet). The pregabalin starts to affect my mood if I take it every day, or maybe I just imagine that because I got suicidal on gapapentin, and that started with mood alterations. And the levo-carbidopa is well-known to cause augmentation. So every Sun and Wed I have a long-acting levo-carb, and the other days I have 75 mg pregabalin. I also use short-acting levo-carb (a single 25/100 pill) to stop breakthrough WED when I'm trying to sleep, but I have to I grin and bear it if I've already had it 3 nights in a row, counting the long-acting nights. So far (6 or 8 months) this works, in combination with my mainstay, which is 9-12 mg hydromorph contin. I dropped that from 18-21 mg by changing my diet, so I usually mention diet at some point in my discussions

Even if you get put on methadone, you can consider alternating it with pramipexole, to avoid tolerance of methadone and augmentation with pramipexole.

But clearly, you need some kind of change. I hope it all happens soon. I'm happy to hear that your sleep doc is not the LPN doc; you should be in good hands with your sleep doc.

Oh yes; sadly I carry that hunger emptiness with me constantly. But would have to say it pre-dates oxycontin ... excuse me while I go and get some chocolate

lol

I initially augmented in less than two weeks - it was so long ago, I don't remember, just that it had happened for several days before my two week followup. So, sometime between 7-10 days, I would guess. My first serum ferritin test was 16, IIRC. My next was 8. This was at least 1-2 years after I agumented. Safe to say that it was likely very low when I augmented.

For years, I operated under the assumption that I could NOT go over 3-4 days max taking pramipexole or I'd risk augmentation.

I recently took pramipexole for almost 8 weeks - I was taking a respite from methadone after getting my third iron infusion. No augmentation as far as I could tell. For me, my iron needs to be in the high 100s or low 200s to be able to reduce my medication (by about 45%). We are all different - just sharing how it works for me.

Great info on iron, Ann. Called to schedule my test.

If I take the pramipexole do I not take the oxycodone that whole day (I take a total of 30mg over a 24 hour period)? Or just skip the bed-time dose? Will I experience withdrawal because I've been taking oxycodone nightly for well over a year (5mg three times a day for back pain prior to the sleep doc upping the dose for the RLS)? I haven't tried it yet.

I am assuming the methadone will also help my back pain, at least as much as the oxycodone does. Is that a valid assumption? The Pain Mgmt Clinic I go to does not prescribe methadone for pain.