I’ve had the Nidra bands for over a month now and I have had remarkable results for severe RLS seven days a week. I’m on a better medication regimen and now with the bands, I have options and more control.
⭐⭐⭐⭐⭐Five stars to the researchers who saw the need and addressed it without drugs. I was a skeptic and I am glad I pushed to obtain this device. It is working for me and the tech support has been top notch, compassionate, knowledgeable; can’t thank them enough!👍
That's great! So pleased for you.😀
Wonderful news.
Can you elaborate a bit? On how it works for you (when you put it on etc) and how it feels.
And what medications and doses were you on before? And which gave you been able to reduce by how much?
We need good news like this. Far vetter than any new med.
If you look at my profile you’ll see I’ve been on dozens of meds aimed at RLS and insomnia. Nothing helps whatsoever. Currently I take a tiny dose of gabapentin for neuropathy resulting from an 8-level spinal fusion not to help my RLS; 300 mg twice a day. I’m tapering off lacosamide/Vimpat and now take 50 mg twice a day. Methadone 15 mg at 9:30 pm. And I take one Milk of Magnesia tablet or eat a couple of dried prunes daily to fend off constipation from the small opioid dose.
Of note, my neurologist doesn’t give me a hard time on the medication doses and manages based on my input. My heart goes out to all on this forum who struggle to get this type of medication. I don’t know if I will be able to completely go off the methadone, but if the Nidra bands keep working, the plan is to taper that next.
I second the request by LotteM for more details. I have been using the bands for 6 weeks, and I'm about ready to quit - my results have not been anywhere near as good as yours. Please let us know:
1. When and how often do you use them. Every day? Same time every day? Only after you notice symptoms or before having symptoms?
2. Does one 30-minute session usually work for you, or do you need a second session sometimes? Do you need a session during the night, or does a session at bedtime see you through?
3. What meds were you taking before you started Nidra? What are you taking now? Dose, frequency?
In my case, I had to reduce my buprenorphine dose so that I would get RLS symptoms because the bands are meant to be used when you have symptoms. When I get symptoms, sometimes one or two sessions with the bands takes care of it for the whole night; sometimes only for an hour or two. I've also noticed that buprenorphine only seems to be effective for 6 or 7 hours when I use the bands, vs. at least 12 hours when I don't.
So sorry to hear about your not so good results, twitcher. Difficult situation. The reduction in bup make actually induce (more) symptoms apart from not covering the existing symptoms.
Would it be an idea to reach out to Dr Berkowski and ask for his views? If he doesn’t know, at least maybe you can think about what might be going on together.
I signed up with Nidra for a follow-up study with Dr. Buchfurher. He is working with them on a two year study with Nidra patients. I had one call with him initially. Hopefully he will stay involved and help me understand what's going on.
I don’t notice any decreased efficacy in my other meds due to using the Nidra bands, but I will pay closer attention to the hours following their use and report back.
I was instructed to always use both bands for a treatment, even if only one leg is having symptoms. I’ve been closely following their instructions.
I put the bands on as soon as my symptoms start. Like you, I finally found a medication regimen that had my RLS mostly covered. Like many, I’m always trying to take the minimum amount of medication. I did have to ‘trigger’ RLS in the beginning to try the bands. Now I trust that the device will work and I am tapering off of my medications one at a time.
I realize that this is just one part of a regimen to control my RLS. I urge you to reach back out to the company or team member who set up and calibrated your bands. They’ve been really terrific. Please let me know if you need contact information for the company. I am located in the United States. I know they would set up a refresher session or trouble-shoot for you. It is key to correctly identify where the peroneal nerve runs down the leg and get proper placement of the bands. I am thin and it is easy for me to locate. Are you certain you are placing them on the nerve? Another thing I found is that they are not as effective if you don’t change the pads on the bands every seven days on the dot. I made that mistake in the beginning and they weren’t the right strength.
I don’t love the sensation which is similar to TENS but, for me, it aches a little right under the sensor. I kind of resist it but, when my legs start going, my husband has been pretty good about urging me to put the bands on. Every time I’ve used them, they have worked. 👍
The 30 minute session has been all I’ve needed except once I ran them for two consecutive 30 minute sessions because my left leg was still twitchy ; )
I have had to use them once during the night. I took them off after the cycle was complete and went back to sleep. I haven’t tried to sleep in them. Like so many RLS suffers., I have serious insomnia, so I can’t say they have improved that but they have improved my RLS and my level of hope/positive attitude.
Thanks for the additional info. Can you share your medication regimen? What were you taking before starting the bands, and how much did you taper down with the bands? If you've only had to use them once during the night, does that mean you normally get symptoms and use them before bedtime? Do you use them daily? I've tried to find a "sweet spot" with my buprenorphine dose - low enough so that I get symptoms often enough to keep using the bands, but not so low that my symptoms are too severe. I believe the Nidra bands work better when the symptoms aren't too severe. My prior dose that had my RLS under control was .4mg before bed (or .2mg before an afternoon nap and .2mg at bedtime if I take a nap that day). I've tried .33mg, .25mg, and .2mg. Unfortunately, I think tinkering with the buprenorphine dosage triggers its own complications.
Yes, I'm working with my Noctrix rep and also with Dr. Buchfuhrer's team that is running the study I signed up for when I started using the bands. Their "service" is good - that's what the $7500 cost covers (and their prior R&D); the devices certainly don't cost a lot to manufacture.
I replied to LotteM above with my med regimen details. My RLS is triggered positionally too so all I have to do is sit down and recline for 5-10 minutes and it starts. As soon as I feel my body start ‘simmering’, I put the bands on. I don’t wait for full-blown symptoms. This happens day or night to me.
I have accepted the fact that, for me to have peace, I will require a combination of things so I plan to get off the lacosamide but only take the methadone as low as my comfort allows and continue to use the Nidra for first-line therapy. For me, getting off all medication is not a reasonable goal. I have other neurological problems.
I am sorry you’re not having better results. After all I’ve tried, drugs, diet, even a bar of soap in the bed, I am shocked that I’ve had such a good response to Nidra bands. I hope you’re able to get a device & medicine regimen dialed in soon. Sounds like you are moving in the right direction.
Nice! My consultant in London is waiting for this to become available in Europe for myself. I’m curious, did you get a chance to use before paying the big price tag? Or was it covered by healthcare insurance?
It was partially covered by insurance so I didn’t pay the $7,500 price I had heard and read about. Looking back, I’m not sure why I followed up because there’s no way I could afford that full price tag!
My insurance did cover a portion. I have Medicare in the US; what is called an advantage plan. The balance was up to me.
A consultant from the Nidra team kept working with me and I was able to set up a monthly payment plan for the balance. I commend this small medical device company for their big-time onboarding/ implementation process. I am a disabled schoolteacher on a tight budget. I really didn’t believe the Nidra bands were ‘for people like me”. No way could I afford the bands out-of-pocket. Yet there are so many nights that I’d pay a million bucks to make my arms and legs just….stop! 😔
I almost gave up on getting the chance to try these but their team stayed with me over a period of several months and I am so glad I kept pushing and they kept helping me work out the finances
This isn’t a cure-all but it is the best tool I have in my RLS and PLMD kit. I tapered off Pramipexole after augmentation and it’s been a living hell ever since. Well worth a try. Keep self advocating even when you’re weary.
Thanks for the response. I certainly don’t expect it to be a cure but anything that results in a reduction in the reliance on drugs sounds great. I hope one day to experience this customer service.
I'm pleased for you. Did you ever try the TENS machine? And did it help?
I note you refer to PLMD as well as RLS. Are you able to tell whether it has had any effect on your PLMD?
I don’t know if using the bands has had any effect on PLMD but I am due for a repeat sleep study. It will be interesting to see the results. My body never seems to stop moving. I feel like I’ve failed every single treatment or gotten partial or temporary relief so I hope Nidra keeps working for RLS — PLMD would be a bonus.
Yes. I was set up with TENS last year. We even had a special TENS nurse who came to the house a few times and trained me and my husband on placement, etc. TENS had zero effect on my RLS. The location/placement wasn’t targeted like the Nidra bands.
Thanks for your reply 👍 And do let us know the results of your sleep study with the Nidra compared with your previous sleep study.
Will do!
I also report very good results from the Noctrix Nidra bands. I have mild RLS, was using low dose (<200 mg) gabapentin and was able to stop using it entirely. I take 25mg iron bisglycinate 3x per week. I wear the bands every night and activate them at the first sign of symptoms, usually 2x weekly. I'm very grateful for the device. I keep them on throughout the night, every night.
Are you still taking 15mg of methadone every evening?
Yes.
does anyone know if this device is available in the UK? Google searches have been fruitless so far. Thanks.
Tonic Motor Activation (TOMAC)
TARGIN NOT WORKING!!
Gabapentin not working
Pramipexole not working now. 
CBD oil stopped working!
