Decreasing Methadone & Using Nidra

[Peppermint5456]

Hello Friends, I have augmentation RLS because of 20+ years of taking Mirapax, and have switched to 5mg methadone for the last 4 years with a fair amount of success. Lately it seems to cause a lot of daytime drowsiness and so I signed up to get the Nidra to see if I can take less methadone. I have had a horrible time weaning off the smallest amount of methadone and it feels like my body is totally rebelling against it, having terrible breakthroughs and requiring even more methedone than normal to calm my RLS down. Has anyone experienced this and has anyone had success in decreasing methadone? I would love to be able to use the Nidra as a solution but so far it isn’t working.

[Madlegs1]

What nidra are you talking about?

Medication, yoga or device?

It would help us in advising you.

Thanks.

[Peppermint5456 in reply to Madlegs1]

Nidra is a new device for RLS, they are bands that provide stimulation to a specific nerve that fools your body into thinking you’re up and walking around. It feels kind of like a TENS machine. They’re meant to be used only when you’re having RLS symptoms.

[Joolsg]

nidrarls.com/Do you mean the leg devices?

Daytime drowsiness can be a side effect of methadone.

Have you considered asking for ritalin or modafinel? They might reduce the drowsiness.

If the methadone is covering the RLS, it might be better to stay on it & deal with the drowsiness side effect.

The Nidra device has had mixed reviews on here. It only seems to work when you are wearing it.

[Peppermint5456 in reply to Joolsg]

Yes, thank you, so far the device doesn’t seem to be worth the awful side effects I am getting from decreasing the methadone. Actually it really bothers me that my body is so dependent on it but as you say it does the trick. I will see about something to combat the fatigue.

[ziggypiggy]

It's no joke trying to reduce the bodies level of opiods. Everytime I try to reduce my opiod a little the withdrawals are terrible. Some have an easier time than others. Without a surefire replacement for my RLS with some other treatment, opiods are what I'm sticking with. I think your experience may be similar to many trying to switch over completely from opiods to the Nidra bands. I hope doctors will be very understanding of this dynamic and not get frustrated with some patients not being able to go through with the "switch", thinking they just want to be opiods for other reasons.

[Peppermint5456 in reply to ziggypiggy]

Thank you, it’s good to know I’m not the only one! I just can’t believe how difficult this is just making a little change, it’s very discouraging. I would love not to take methadone but I think I’m stuck with it. A few months ago my doctor suggested I switch to Oxycodone to see if that would help with the drowsiness, but even that didn’t work - I had all kinds of breakthroughs. You would think that going from one to the other wouldn’t make that much difference but apparently my body prefers methadone.

[Madlegs1 in reply to Peppermint5456]

It really isn't "a little change"It's huge- going from something that almost totally controls the restlessness to another thing that only distracts when the RLS is already occurring.

RLS is an overwhelming feeling, and opioids successfully stop your body actually feeling it.

However, it is not infallible, triggers will overcome the opioids ( unless one is on such a huge dose that makes for zombieism.)

What you are trying to achieve is rather like putting a plaster on a severe artery wound rather than a tourniquet!😝

I wish you all the success possible --- but don't be thinking that what you are trying to do is no more than a stroll in the park.

Good luck.

[Peppermint5456 in reply to Madlegs1]

So true! I regret all those years of Mirapax but nobody knew the ramifications at the time. But you would think going from one opioid to another wouldn’t be a problem, and I had a terrible reaction. Then recently I just tried to cut the methadone by 25% (I take 5 mg) and use the Nidra, but I was having severe breakthroughs not only at night but during the day. I only did that for two nights (went back to my normal dose of methadone) and 3 days later my body is still in rebellion. I’m not sure I’ll ever be able to use any kind of alternative.

[Munroist]

Buprenorphine is another low dose opioid recommended for RLS which might provide a better alternative to methadone. and may have better side effects and also allow you to reduce. It can be used to help people struggling with opioid withdrawal so may be better suited to reducing the dose.

[Peppermint5456 in reply to Munroist]

Thank you, my doctor would have liked to start me on that 4 years ago but at the time my insurance didn’t cover it and it was very expensive. I should check it out again but am very afraid now of the process of switching. Maybe there’s a way that wouldn’t be so traumatic.

[Madlegs1 in reply to Peppermint5456]

It's ok to try switching from one opioid to another--- just make sure to get the relevant doses correct-- if not sure ,get a pharmacist to check for you.

[Sleepy65]

I am very interested in hearing about your Nidra usage. I’ve been wanting to try but not available in any state close to where I live. I’m currently weaning down on mirapex but started taking a 2nd iron pill every week to see if that will help alleviate my symptoms. I’ve been on gabapentin before, but have osteoporosis so I won’t go back on it. I won’t take any opioids either so I’m kind of stuck. I do use a weighted blanket over my legs in bed and I think that helps.

[Peppermint5456 in reply to Sleepy65]

I would think you would be a good candidate for the Nidra. For me it works for breakthroughs when my medication isn’t enough, but I have a very severe case of RLS because of all those years of Mirapax. It sounds like you’re not doing too badly weaning yourself off - I went through full on withdrawal! I’m on Medicare with a supplement and the Nidra was completely covered. I hope there is a way for you to get access to it, it’s certainly worth a try, especially since you’re not on opioids.

[Sleepy65 in reply to Peppermint5456]

I’m also on Medicare with a supplement as of 1/1. I already have the prescription for it. They were supposed to release in Minnesota last year which is where my son lives but now it seems like they are working on the east coast states so I’m waiting as I live in Illinois. You need to have a physical address in a state where it’s been released.

[707twitcher]

I've been using the Nidra bands for almost 5 months. They say it takes a few weeks of use before they are very effective. I take buprenorphine, and was hoping to decrease dose with Nidra taking its place. Here are some of my observations/comments:

- Don't reduce your methadone first; wait for Nidra to become effective, then try very small med reduction.

- The bands are only to be used when you are having symptoms; for me this meant needing to reduce my buprenorphine dose a little so that I was getting twitchy at least a couple times a week and then use Nidra.

- The bands work for me, and often the effect lasts all night after having the bands turned on for one or two 30-minute cycles. However, they only work when my symptoms are mild; they do nothing for more severe RLS.

- I got tired of losing sleep while trying to reduce med dose and replacing with Nidra use; I've since accepted that any reduction in dose will be very minor (at least for now), and use Nidra for the occasional break-through symptoms. My buprenorphine dose is currently .33mg per night vs. the prior .4mg - not a very large reduction, and not enough to have any real impact on side effects.

Bottom line: I'm glad I have them (and glad that Medicare and supplemental insurance covered the cost), but they aren't the miracle worker that I had hoped for.

[Peppermint5456 in reply to 707twitcher]

You just expressed the solution I think I have reconciled for myself. It’s not worth having to work with the bands in the middle of the every night as I try to wean off medication ever so slightly, but I’m glad I have them as a solution when I have an especially bad night. They work for that but not for a real placement for medication or even partial medication. At least that’s my experience, I hope they work better for others.

[DogBella]

I, too, started using Nidra band therapy. My doctor told me not to reduce any medications for a while at the start of the Nidra therapy. I do believe I am getting less RLS movement now. I still take my buprenorphine and haven't reduced it as yet. I take the buprenorphine in the evening. I also take Gabapentin. My goal is less medication but I believe the Nidra is about reducing RLS. I will wait for a while before giving a better opinion. My RLS was severe while getting off ropinirole. My life with RLS has been a journey and I hope one day I might be off drugs.

[Peppermint5456 in reply to DogBella]

I wish the best for you! Keep us informed, I would love to be off meds too.

[Ert223]

In regards to opiods. On occasion when I want to take an opiod break I take kratom.Kratom is related to the coffee plant.

It's mechanism of action is different from that of opiods. I use Bumble Bee kratom. Maengda. I go from 50 mgs of norco to zero, in one day no withdrawals. Do not take with modofinal. I have been on the same dose of narcotics for 6 years. If you take an opiod break for a day or so. You can then restart opiods and there effect is much better.

This way you don't have to keep climbing the opiod ladder.

Hope this helps.