I have been using the Nidra TOMAC bands for 5 weeks now. So far, I am pretty disappointed. There is some hope that more improvement will occur with continued use, but I'm not holding my breath.
I would describe my underlying RLS symptoms as fairly severe since augmentation kicked in last year. I still get twitchy legs, but I frequently have it in my arms and upper torso - and that just seems so much worse. It's a feeling that makes me want to jump out of my skin (or off a tall building...). Buprenorphine has been completely controlling my RLS symptoms for almost a year, but I keep seeking alternatives or ways to reduce dose in the hopes of reducing side effects (constipation, fatigue and insomnia for me). Because the bands are only meant to be used when you are having symptoms (they actually frequently trigger RLS if you use them when you don't have symptoms), I have reduced my buprenorphne dose - first to .2mg, then to .33mg, from my prior .4mg. I have used the bands when having symptoms at various times - midnight, 5am & naptime are frequent times for me. Roughly half the time, using the bands did bring complete relief for at least several hours. But the relief was enough to see me completely through the night (or nap) only about 25% of the time. The rest of the time I either got up earlier than I would have preferred or I got up and took more buprenorphine.
I also cannot say that my minor reduction in buprenorphine dose means reduced side effects. Probably somewhat, but not dramatically.
I have undoubtedly lost an average of at least one hour's sleep per night while trying the bands out. I'm not sure how much longer I will continue. For now, I'm thinking that I will ultimately revert to my normal buprenorphone dose and keep the bands around for the occasional break-through symptoms or afternoon naps. But I'll stick it out a while longer, hoping that continued usage improves results.
The fact that I have no out-of-pocket cost for the bands (Medicare and supplemental insurance) has made this experiment palatable. I would certainly be upset if I had to pay the $7,500 that they reportedly charge.
Stay tuned....
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707twitcher
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Oh I’m so very sorry to read this! I have been eagerly waiting to hear your review. I had thought it might be beneficial since Dr. B said it was promising. I don’t think I’m going to purchase it now. Such a disappointment. Sorry
If your insurance will cover it, it might still be worth a try for you, especially if your RLS symptoms aren’t too severe. As you’ve probably gathered by now, we all react differently to meds, etc.
Surprisingly the bands did help with arm and torso symptoms - sometimes. I think the more severe the symptoms, the less likely it is that the bands will relieve them.
Thanks for your review. Can you tell what is the difference to a TENS-device placing electrodes nearby the knees? I also don‘t understand why is it so pricey? I doubt it comes with some sensors just modulating electrical pulses going through the skin.
I don’t know the difference with a TENS unit. I know the Nidra bands focus on the peroneal nerve. Do TENS units also do that?
They likely attempt to justify the price by focusing on the time they spend with each “patient “. They work with your doctor to get a prescription, work with your insurance to get coverage, spend time with you calibrating the bands to the appropriate level of signal, call weekly for a while to check status and answer questions, etc.
I just had to quit buprenorphine (and before that methadone) due to opioid itch. I definitely know what you mean about those 3 side effects! For now my dr is increasing my gabapentin way too slightly in my opinion, I hope it goes okay, that's what he wants me to try, at least for 10 days. Then maybe Lyrica. I've been using kratom for a few days but I must have skin issues cuz it also caused itchiness. So I'm just going to quit using it.
Anyway, my dr just ordered the Nidra. I'm sure it'll take some time. So it sounds like, at the moment, you are not very satisfied with the darn Nidra. How maddening to have the bands stir up the RLS! I'm on medicare too.
I'm sad because for 3 years now I have almost never had to even think about my RLS thanks to opioids, but now it seems like I'll have to be quite aware of it, assessing what I do or don't need, keeping track, all that. It just seems so labor intensive and like I said I'm just not accustomed to even thinking about it. Bummer.
Hopefully you have more success than me (so far). I think the fact that the bands trigger symptoms if you use them when you don’t have them may be just a function of their signal to the peroneal nerve being an on/off switch (my take on this- I haven’t seen Noctrix explain what happens). I used the bands several times when I had no symptoms because I was trying to use them daily in order to keep the adjustment process progressing. Continuing the 30 minute session, or starting a second one, did relieve the symptoms it kicked up.
Thanks, and thanks for explaining a little more. Triggering symptoms would be such a pain! Glad that an extra 30 minute session cleared it up. Arghhh this is going to be such an adjustment! Thanks again
I may have told you this before but in case I didn't. Increase your gabapentin by 100 mg every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin (lyrica) if you switch )
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason
If you switch to pregabalin divide the gabapentin dose by 6 to get the equivalent dose.
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