Nidra TOMAC device

Posted by linn4549 @linn4549, Jun 13 8:18am

Does anyone have experience with the Nidra Tomac device for RLS? I am currently on Pramipexole 0.25 Mg Tablet and although it works for me I would like to not have to take medication if possible.

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Hi linn4549, Nidra is a TOMAC device--tonic motor activation. It works with high frequency, while a TENS unit works with low frequency (for those familiar with TENS). It feels like a weird "buzzing."My husband, sleeping beside me, has no idea if it's turned on or not.

Before it was made available by the Noctrix Company, Nidra was FDA approved, a step necessary for insurance coverage. Nidra is a prescription-only device.

Noctrix developed the Nidra and then, made it available on a state-by-state basis. There is an in-person "activation" session necessary and it took a while to hire and train personal to do the activations in different locations, across the country. My state wasn't included early on, so (after I waited over a year) I was allowed to have my Nidra shipped to a friend in another state and have my activation session there.

Then noctrix provided someone who emailed weekly (during the first couple of months), making sure I had no questions. This person can still be contacted by me, anytime, if new questions arise.

My Nidra was prescribed by my expert RLS doctor, J Andrew Berkowski, MD. I had already been through a number of unsuccessful RLS treatments and my RLS was severe. I'm sure he documented all this clearly. From the time he wrote the prescription to my receiving the device was about 3 weeks. My guess is that insurance probably requires other, cheaper, treatments be tried first (and fail) before the Nidra is approved--and I met that criteria.

I have Medicare. Someone in our forum posted a while ago about her Medicare Advantage Plan refusing to approve the Nidra for her because it is "experimental." (Untrue! FDA approval means it isn't experimental.)

Medicare doesn't "buy" the device outright--it rents the Nidra for 13 months and then, after that, the patient owns it. I got mine in April 2025, a little over 13 months ago.

Commercial insurance and Medicare Advantage Plans buy the Nidra--they don't rent it, initially, like Medicare does.

I asked a lady in the Noctrix billing dept, out of curiosity, if there was ever successful billing to a Medicare Advantage Plan and she said there was.

My RLS doctor indicated some frustration with insurance denials for some of his other patients, although we didn't go into whether it was certain kinds of insurance or all insurances--or what symptoms the denied patients had.

The cost, (if insurance denies) is about $6,000 for the bands, plus a month's supply of "sticky pads" (technically: "charge dispersing interfaces") is $75. The sticky pads are supposed to changed weekly. (That adds up to $900 per year)

Does it work? It did for me, beyond my wildest dreams. But, my doctor told me it hasn't worked for all of his (RLS) patients. There is no guarantee that it will work for everybody.

The Nidra are two bands, worn below the knee on both legs. There is a button you press to turn them on, when RLS symptoms start. They run for 30 minutes and I have had no problem going back to sleep while they are running. Nidra helps me go back to sleep. It makes the RLS stop.

It took time to adjust. It wasn't instantly "oh, this feels good." It was a matter of using it, over and over. Since I had episodes almost every night, there were many opportunities to use it. Settling in took 3 to 4 weeks for me.

"Neuromodulation" (thank you, Dr Aggarwal, for sharing this term), was something I never expected. Months into using the Nidra, I also started to experience fewer and less severe episodes. I had been told this could happen, but frankly I didn't believe it, so when I start to notice an overall change in my RLS I was very surprised and, obviously, delighted.

It is comfortable to wear? Not as comfortable as "nothing" but it was well designed and not uncomfortable. Although I have had two long spells (one a month long and another about 8-9 weeks long) with NO night-time RLS symptoms, at all, I still wear the bands religiously, every night.

Like you, linn4549, initially, I thought about ultimately reducing, or stopping, medication by using the Nidra. For me, this did not work. I still need medication.

Also, when my RLS symptoms were particularly bad (after I overstretched and overexercised) the Nidra could not combat those episodes (I just had to live through them).

So, my initial hopes were not realized, but instead the "neuromodulation" effect (reprograming my brain through use of the Nidra) has been a pretty fabulous outcome. Night after night--sleeping without any RLS at all!

The Noctrix company has been very supportive. Look on YouTube for their presentations about Nidra.

I have the sense that insurance can be an issue. Make sure your need is well documented (by your doctor). An expert RLS doctor may have more success doing this. Noctrix wanted "patient history"at the same time my prescription was submitted. You can always call Noctrix and ask them questions about submitting a prescription.

My story was that I had tried gabapentin, IV iron and pregabalin--three medications that can treat RLS successfully, but did not work for me, at all. I had been to 2 sleep psychologists without improvement. I had developed insomnia and anxiety about sleeping--and the insomnia/anxiety went on for years. I refused to take a dopamine agonist drug and my doctor refused to prescribe one because of augmentation. (Lucky me!) The medication I was on (buprenorphine) since 10/2025 gave substantial improvement--but was still not entirely effective. I still had RLS episodes almost nightly. Before my Nidra, the longest run of episode-free nights I ever had (since 2010) was 3 nights in a row. Nidra has now given me about "personal best" of 59 symptomless nights in a row--before that there was a 28 days symptomless run, a couple months ago.

It may be that insurance won't be impressed with wanting to get off a dopamine agonist drug--which has been controlling RLS symptoms successfully--as the only reason to approve a Nidra. For years, dopamine agonist drugs were the mainstay of RLS treatment.

I have no idea if the Nidra is--or could be--effective treating someone with RLS augmentation. My only experience with augmentation is reading about it and wanting to avoid it, by never taking a dopamine agonist drug.

While I recommend Nidra to all of you, insurance approval is a practical consideration. Can anyone else share experience with insurance paying (or not paying) for Nidra? I think that information would be helpful to our forum.

REPLY
Profile picture for missjb @missjb

Hi linn4549, Nidra is a TOMAC device--tonic motor activation. It works with high frequency, while a TENS unit works with low frequency (for those familiar with TENS). It feels like a weird "buzzing."My husband, sleeping beside me, has no idea if it's turned on or not.

Before it was made available by the Noctrix Company, Nidra was FDA approved, a step necessary for insurance coverage. Nidra is a prescription-only device.

Noctrix developed the Nidra and then, made it available on a state-by-state basis. There is an in-person "activation" session necessary and it took a while to hire and train personal to do the activations in different locations, across the country. My state wasn't included early on, so (after I waited over a year) I was allowed to have my Nidra shipped to a friend in another state and have my activation session there.

Then noctrix provided someone who emailed weekly (during the first couple of months), making sure I had no questions. This person can still be contacted by me, anytime, if new questions arise.

My Nidra was prescribed by my expert RLS doctor, J Andrew Berkowski, MD. I had already been through a number of unsuccessful RLS treatments and my RLS was severe. I'm sure he documented all this clearly. From the time he wrote the prescription to my receiving the device was about 3 weeks. My guess is that insurance probably requires other, cheaper, treatments be tried first (and fail) before the Nidra is approved--and I met that criteria.

I have Medicare. Someone in our forum posted a while ago about her Medicare Advantage Plan refusing to approve the Nidra for her because it is "experimental." (Untrue! FDA approval means it isn't experimental.)

Medicare doesn't "buy" the device outright--it rents the Nidra for 13 months and then, after that, the patient owns it. I got mine in April 2025, a little over 13 months ago.

Commercial insurance and Medicare Advantage Plans buy the Nidra--they don't rent it, initially, like Medicare does.

I asked a lady in the Noctrix billing dept, out of curiosity, if there was ever successful billing to a Medicare Advantage Plan and she said there was.

My RLS doctor indicated some frustration with insurance denials for some of his other patients, although we didn't go into whether it was certain kinds of insurance or all insurances--or what symptoms the denied patients had.

The cost, (if insurance denies) is about $6,000 for the bands, plus a month's supply of "sticky pads" (technically: "charge dispersing interfaces") is $75. The sticky pads are supposed to changed weekly. (That adds up to $900 per year)

Does it work? It did for me, beyond my wildest dreams. But, my doctor told me it hasn't worked for all of his (RLS) patients. There is no guarantee that it will work for everybody.

The Nidra are two bands, worn below the knee on both legs. There is a button you press to turn them on, when RLS symptoms start. They run for 30 minutes and I have had no problem going back to sleep while they are running. Nidra helps me go back to sleep. It makes the RLS stop.

It took time to adjust. It wasn't instantly "oh, this feels good." It was a matter of using it, over and over. Since I had episodes almost every night, there were many opportunities to use it. Settling in took 3 to 4 weeks for me.

"Neuromodulation" (thank you, Dr Aggarwal, for sharing this term), was something I never expected. Months into using the Nidra, I also started to experience fewer and less severe episodes. I had been told this could happen, but frankly I didn't believe it, so when I start to notice an overall change in my RLS I was very surprised and, obviously, delighted.

It is comfortable to wear? Not as comfortable as "nothing" but it was well designed and not uncomfortable. Although I have had two long spells (one a month long and another about 8-9 weeks long) with NO night-time RLS symptoms, at all, I still wear the bands religiously, every night.

Like you, linn4549, initially, I thought about ultimately reducing, or stopping, medication by using the Nidra. For me, this did not work. I still need medication.

Also, when my RLS symptoms were particularly bad (after I overstretched and overexercised) the Nidra could not combat those episodes (I just had to live through them).

So, my initial hopes were not realized, but instead the "neuromodulation" effect (reprograming my brain through use of the Nidra) has been a pretty fabulous outcome. Night after night--sleeping without any RLS at all!

The Noctrix company has been very supportive. Look on YouTube for their presentations about Nidra.

I have the sense that insurance can be an issue. Make sure your need is well documented (by your doctor). An expert RLS doctor may have more success doing this. Noctrix wanted "patient history"at the same time my prescription was submitted. You can always call Noctrix and ask them questions about submitting a prescription.

My story was that I had tried gabapentin, IV iron and pregabalin--three medications that can treat RLS successfully, but did not work for me, at all. I had been to 2 sleep psychologists without improvement. I had developed insomnia and anxiety about sleeping--and the insomnia/anxiety went on for years. I refused to take a dopamine agonist drug and my doctor refused to prescribe one because of augmentation. (Lucky me!) The medication I was on (buprenorphine) since 10/2025 gave substantial improvement--but was still not entirely effective. I still had RLS episodes almost nightly. Before my Nidra, the longest run of episode-free nights I ever had (since 2010) was 3 nights in a row. Nidra has now given me about "personal best" of 59 symptomless nights in a row--before that there was a 28 days symptomless run, a couple months ago.

It may be that insurance won't be impressed with wanting to get off a dopamine agonist drug--which has been controlling RLS symptoms successfully--as the only reason to approve a Nidra. For years, dopamine agonist drugs were the mainstay of RLS treatment.

I have no idea if the Nidra is--or could be--effective treating someone with RLS augmentation. My only experience with augmentation is reading about it and wanting to avoid it, by never taking a dopamine agonist drug.

While I recommend Nidra to all of you, insurance approval is a practical consideration. Can anyone else share experience with insurance paying (or not paying) for Nidra? I think that information would be helpful to our forum.

Jump to this post

@missjb Thank you so much for your very informative response. I really appreciate you taking the time to share both your experience and your knowledge about the Nidra TOMAC device.

From what you've described, it sounds like your RLS symptoms are considerably more severe than mine, which makes me wonder whether I would even qualify for insurance coverage. I'm also somewhat skeptical about whether the device would allow me to come off my Pramipexole completely, which is one of the things I'd hope for if I went through the whole process.

At this point, I'm honestly questioning whether it's worth the time and effort required to pursue approval, especially if there's no guarantee that insurance will cover it or that it would significantly reduce my need for medication. Still, hearing a real-world perspective from someone who has experience with it is extremely helpful.

Thank you again for sharing your story and answering my questions. You've given me a lot to think about.

REPLY

Hi, I’m 72, I’ve had RLS all my life. I have the Nidra. It was starting to work (it can take a while) when I developed very painful calves and had to quit. I felt so disappointed!

REPLY
Profile picture for mikayla68 @mikayla68

Hi, I’m 72, I’ve had RLS all my life. I have the Nidra. It was starting to work (it can take a while) when I developed very painful calves and had to quit. I felt so disappointed!

Jump to this post

@mikayla68 I'm sorry your Nidra had to be abandoned because of painful calves.

One thing this forum has taught me is many of us have differences in RLS symptoms and many of us respond differently to the same treatment. I'm sorry that what worked for me, had a disappointing outcome for you.

While there has been positive past research on TOMAC's efficacy, the Nidra is relatively new in terms of wide-spread use. Our doctors have prescribed for us, but don't really have that much experience as a basis to understanding when something "goes wrong" or doesn't work.

Out of curiosity, I wonder if the painfulness is when the Nidra is running or does it create pain that stays with you when the Nidra isn't turned on.

Prior to RLS medication or the Nidra, I used a massager on my legs for RLS symptoms--for years. Now, when I turn on the Nidra, I also hold the massager to my leg for a minute or two, because initially the Nidra feels "strong" and the massager distracts from that. Within that minute or two, the Nidra's overly strong effect seems to subside--my massager gets turned off (and I go back to sleep).

I wonder if I didn't use the massager (which is second nature to me now) if I would find the initial jolt of the Nidra uncomfortable.

It can also be uncomfortable if the sticky pads are not held tightly in place. That can be like a shock.

But you said your calves are in pain--not really that the Nidra running causes calf pain--so probably not the same thing at all. It sound like using the Nidra has left your calves in pain when you aren't wearing the bands. Is that correct?

How long did you have the Nidra (and use it) before your calves became painful? Did you contact the company for help with this problem?

REPLY
Profile picture for missjb @missjb

@mikayla68 I'm sorry your Nidra had to be abandoned because of painful calves.

One thing this forum has taught me is many of us have differences in RLS symptoms and many of us respond differently to the same treatment. I'm sorry that what worked for me, had a disappointing outcome for you.

While there has been positive past research on TOMAC's efficacy, the Nidra is relatively new in terms of wide-spread use. Our doctors have prescribed for us, but don't really have that much experience as a basis to understanding when something "goes wrong" or doesn't work.

Out of curiosity, I wonder if the painfulness is when the Nidra is running or does it create pain that stays with you when the Nidra isn't turned on.

Prior to RLS medication or the Nidra, I used a massager on my legs for RLS symptoms--for years. Now, when I turn on the Nidra, I also hold the massager to my leg for a minute or two, because initially the Nidra feels "strong" and the massager distracts from that. Within that minute or two, the Nidra's overly strong effect seems to subside--my massager gets turned off (and I go back to sleep).

I wonder if I didn't use the massager (which is second nature to me now) if I would find the initial jolt of the Nidra uncomfortable.

It can also be uncomfortable if the sticky pads are not held tightly in place. That can be like a shock.

But you said your calves are in pain--not really that the Nidra running causes calf pain--so probably not the same thing at all. It sound like using the Nidra has left your calves in pain when you aren't wearing the bands. Is that correct?

How long did you have the Nidra (and use it) before your calves became painful? Did you contact the company for help with this problem?

Jump to this post

@missjb Hi, do you work for Nidra?
Yes, my calves were in pain all day and night. It was bad. I assure you I knew what I was doing. I'm 72, and have had calf cramps most of my life.

REPLY

Hi again, mikayla68

I laughed out loud reading "do you work for Nidra?" I'm several years older than you are and I work for no one --except my husband on occasion and truthfully, when my RLS was really bad and I was so sleep deprived, he did almost all of the work in our household.

My relationship with the Noctrix Company (that makes the Nidra) is purely one of gratitude. I mention Nidra on our forum with enthusiasm because, for me, Nidra (along with medication) has reduced my amount of RLS symptoms to very, very few--which has given me back my ability to sleep. ..I wish I could also get back the last 15 years... but that's another story--sleep is so much better, but now age is catching up with me.

I suggest people contact the Noctrix Company with questions or problems because my communication with them was so favorable--not because I have any connection to them (except as one of their many customers).

It sounds like the Nidra made your calf muscles contract and then get locked into contractions--which does sound very painful. Bad enough to have one problem--you don't need to trade that problem for another (particularly one which is worse.)

During my last conversation with my doctor he told me that he has prescribed the Nidra for patients who received no benefit from it. Stuff like that makes me curious: why has it helped me (so much) and then not all other people who suffer for RLS?

Well, I think your doctor was forward thinking to have prescribed the Nidra, even though it was not helpful for you. Hopefully, this means he (or she) will continue to try treatments and maybe find something that gives you as much relief as I have now. I certainly hope so.

Thank you for sharing your experience.

Wishing you the best!

REPLY
Profile picture for missjb @missjb

Hi again, mikayla68

I laughed out loud reading "do you work for Nidra?" I'm several years older than you are and I work for no one --except my husband on occasion and truthfully, when my RLS was really bad and I was so sleep deprived, he did almost all of the work in our household.

My relationship with the Noctrix Company (that makes the Nidra) is purely one of gratitude. I mention Nidra on our forum with enthusiasm because, for me, Nidra (along with medication) has reduced my amount of RLS symptoms to very, very few--which has given me back my ability to sleep. ..I wish I could also get back the last 15 years... but that's another story--sleep is so much better, but now age is catching up with me.

I suggest people contact the Noctrix Company with questions or problems because my communication with them was so favorable--not because I have any connection to them (except as one of their many customers).

It sounds like the Nidra made your calf muscles contract and then get locked into contractions--which does sound very painful. Bad enough to have one problem--you don't need to trade that problem for another (particularly one which is worse.)

During my last conversation with my doctor he told me that he has prescribed the Nidra for patients who received no benefit from it. Stuff like that makes me curious: why has it helped me (so much) and then not all other people who suffer for RLS?

Well, I think your doctor was forward thinking to have prescribed the Nidra, even though it was not helpful for you. Hopefully, this means he (or she) will continue to try treatments and maybe find something that gives you as much relief as I have now. I certainly hope so.

Thank you for sharing your experience.

Wishing you the best!

Jump to this post

@missjb
Hey! I’m new to this forum! I have been suffering from RLS for over 40 years! It started with my first pregnancy. My OB doctor thought I was having ‘some sort of seizures’ in my legs! It was horrible. I had what people describe as the ‘budgies’ - creepy, crawly, uncomfortable feelings in my legs (thighs). Then the uncontrollable jumping legs. It was not just an ‘urge’ to move my legs; mine were violently jumping! When I would drive my car to work, they would jump and jerk and slam right into the steering wheel!! At night, I would lay on the couch and my husband would rub my legs to try and give me some relief. He was so kind and patient rubbing my legs. And then the violent jerking would start. He would say, ‘hold your legs still so I can rub them’!! I would say, ‘I can’t keep them still’!! It was horrible! I ended up taking Ambien for sleep! That would knock me out and I didn’t care if they jumped or it!! My husband would tell me the next morning that they jumped all night! Needless to say, I have been sleep-deprived for decades! My career was a Medical Transcriptionist. I worked in a Neurological office for about 6 years. One of the neurologists in the office started me on low dose opioids in the 90’s (Vicodin). He said there were studies that proved it helped RLS greatly. It did! The Vicodin (plus Phenergan that I had to take to quell the nausea from the Vicodin) finally calmed my legs and allowed me to sleep! It was a miracle! So, I was on Vicodin (1/2 tablet) and Phenergan for well over a decade. Then it got where my legs were getting really ‘busy’ in the evenings, so I bumped the Vicodin up to a whole tablet. During this time, I was also soaking in very hot tub baths trying to get relief! That helped for awhile. Then, my doc added Clonazepam to the regime. She said it was used off-label to treat RLS. The combination of the Vicodin plus Phenergan, plus Clonazepam, plus hot baths did seem to help for awhile! Then I would wake up in the middle of the night and they would be jumping so bad that I couldn’t get back to sleep! So, I would wrap a heating pad around each leg and go back to sleep! It was all so frustrating! Went on like this for 30 years. Then my doctor recommended trying Gabapentin. I started at 300 mg and it was a miracle! I couldn’t believe they were my legs. They were calm! I could sleep! Lasted about 6 months. Doctor upped the dose to 600 mg. That worked a good while - until it didn’t. All the time, I’m constantly researching about RLS, looking for new treatments! When I saw an article on a new, non-pharmaceutical treatment, I was intrigued. After reading reviews on the TOMAC Nidra bands, I made an appt to see my neurologist immediately! She had never heard of it! I told her Medicare covered it and gave her the codes to use to get it approved! It took about 5 weeks, but her nurse got me approved! I was so hopeful and so excited to try it! I have been using the Nidra bands since April and I must say they are little miracle wraps! They work! I am shocked, yet so very pleased! My legs feel normal! And if I do start getting ‘busy legs’, I put the pads on immediately and them then the jumping stops and I can sleep through the night! No more scalding tub baths, no more opioids, Gabapentin has gone from a max of 1200 down to 300! I am thrilled!! No more budgies, pain, cramps, jumping. . . I am 70-years old and so grateful I have been given some normalcy back in my life! Thank you Noctrix for the Nidra pads! Life is good again! And once I do a 30 minute session, sometimes my legs stay calm for 6-7 days. I don’t really understand why, but I’m very grateful. I do hope other folks are having just as much success!!

REPLY
Profile picture for kdunn44 @kdunn44

@missjb
Hey! I’m new to this forum! I have been suffering from RLS for over 40 years! It started with my first pregnancy. My OB doctor thought I was having ‘some sort of seizures’ in my legs! It was horrible. I had what people describe as the ‘budgies’ - creepy, crawly, uncomfortable feelings in my legs (thighs). Then the uncontrollable jumping legs. It was not just an ‘urge’ to move my legs; mine were violently jumping! When I would drive my car to work, they would jump and jerk and slam right into the steering wheel!! At night, I would lay on the couch and my husband would rub my legs to try and give me some relief. He was so kind and patient rubbing my legs. And then the violent jerking would start. He would say, ‘hold your legs still so I can rub them’!! I would say, ‘I can’t keep them still’!! It was horrible! I ended up taking Ambien for sleep! That would knock me out and I didn’t care if they jumped or it!! My husband would tell me the next morning that they jumped all night! Needless to say, I have been sleep-deprived for decades! My career was a Medical Transcriptionist. I worked in a Neurological office for about 6 years. One of the neurologists in the office started me on low dose opioids in the 90’s (Vicodin). He said there were studies that proved it helped RLS greatly. It did! The Vicodin (plus Phenergan that I had to take to quell the nausea from the Vicodin) finally calmed my legs and allowed me to sleep! It was a miracle! So, I was on Vicodin (1/2 tablet) and Phenergan for well over a decade. Then it got where my legs were getting really ‘busy’ in the evenings, so I bumped the Vicodin up to a whole tablet. During this time, I was also soaking in very hot tub baths trying to get relief! That helped for awhile. Then, my doc added Clonazepam to the regime. She said it was used off-label to treat RLS. The combination of the Vicodin plus Phenergan, plus Clonazepam, plus hot baths did seem to help for awhile! Then I would wake up in the middle of the night and they would be jumping so bad that I couldn’t get back to sleep! So, I would wrap a heating pad around each leg and go back to sleep! It was all so frustrating! Went on like this for 30 years. Then my doctor recommended trying Gabapentin. I started at 300 mg and it was a miracle! I couldn’t believe they were my legs. They were calm! I could sleep! Lasted about 6 months. Doctor upped the dose to 600 mg. That worked a good while - until it didn’t. All the time, I’m constantly researching about RLS, looking for new treatments! When I saw an article on a new, non-pharmaceutical treatment, I was intrigued. After reading reviews on the TOMAC Nidra bands, I made an appt to see my neurologist immediately! She had never heard of it! I told her Medicare covered it and gave her the codes to use to get it approved! It took about 5 weeks, but her nurse got me approved! I was so hopeful and so excited to try it! I have been using the Nidra bands since April and I must say they are little miracle wraps! They work! I am shocked, yet so very pleased! My legs feel normal! And if I do start getting ‘busy legs’, I put the pads on immediately and them then the jumping stops and I can sleep through the night! No more scalding tub baths, no more opioids, Gabapentin has gone from a max of 1200 down to 300! I am thrilled!! No more budgies, pain, cramps, jumping. . . I am 70-years old and so grateful I have been given some normalcy back in my life! Thank you Noctrix for the Nidra pads! Life is good again! And once I do a 30 minute session, sometimes my legs stay calm for 6-7 days. I don’t really understand why, but I’m very grateful. I do hope other folks are having just as much success!!

Jump to this post

@kdunn44 Thank you, kdunn44, for posting your experience and about your success. Because my RLS symptoms are "different" than descriptions of RLS on the internet, I have been curious what exact symptoms others on the forum have.

I found it very interesting to compare notes with you. I appreciate the detail of your descriptions.

My RLS is also in my thighs--for years only the left and when the right joined in, the left (for the most part) has still been the more troublesome. Then, about 8 years ago, it start to extend up to the top of my left buttock.

Interestingly, when I depended on my massager for relief (before medication and before Nidra), if I held my massager on my right leg (which wasn't hurting), it could stop the pain in my left leg.

I should have picked up, by that, that my experience was caused by something neurological. But, it just "felt" muscular, so I repeated physical therapy, over and over, to no avail (for years).

My RLS never involved jerking or twitching until the last few years. Even now, it's rare and only tiny twitches. It feels more like the "jerk" is stuck and can't get out--so the sensation is an aching pain--that rapidly builds in intensity. I have always described my RLS as painful, even when I didn't know it was RLS.

You and I both started the Nidra last April. Initially, it just worked on the episode I was having. Over time, through "neuromodulation," I started having no symptoms at night. (Yes, miraculous !!!) I think my longest stretch without symptoms at night has been about 9 or 10 weeks. (Still, I faithfully put the bands on, every night).

I do have occasional RLS, laying on the sofa, watching TV in the evening. I tend to get up and walk for these (because I'm still wearing long pants and don't want to be bothered to change to put on my Nidra.)

I take subloxone (a drug used like methadone for people with addiction problems) in a very low dose. It provides a small amount of opioid and it's helpful. I tried to lower the dose after Nidra started working so well, but RLS came back--not terribly, but after having no symptoms at night, I've become spoiled and intolerant of waking in pain.

For me the gabapentin and pregabalin routes had no effect. It is interesting how something works for some of us, but not others.

Before medication/Nidra, I went through the heating pads as well as ice packs. For a while, I had a cooler next to my bed. It was vital when we bought a house that it always had soaking bathtub for hot baths.

Like me, it sounds like your doctor never put you on a dopamine agonist drug. We were both lucky to avoid this!

Like me, you discovered Nidra through your own research. But, my neurologist, is a RLS specialist, so he knew about it. Clever that you knew the correct code.

Another RLS neurologist (Dr Aggarwal in Pittsburgh) suggested I try turning on the Nidra when I first get into bed--before any symptoms--but now that I have few symptoms I don't want to bother with that. Maybe, it would jump start the neuromodulation for some people, which I think I am past needing. But, it is interesting. Next time I communicate with my own neurologist, I'll ask him what he think about this.

Both your story and my story involve worsening symptoms over time. I hope our medication and Nidra combination will work for the rest of our lives. Please let's stay in contact through this forum. It is so great to finally have a Nidra-buddy who is having success similar to my own.

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Hi there,
I just discovered this thread. My doctor submitted the prescription for the Nidra and the company has called me to set it up. However, even with 3 phone calls to Medicare, I can't get any verification that it will be covered. I've had RlS for years and I'm on pregabalin and ropinirole. My doc doesn't want to increase the ropinirole any higher. When I gave the medicare persons the codes and the provider number, they couldn't find anything. Do I just say yes to the Nidra consultant and hope for the best? I don't want a huge bill if it's not covered. Why can't I get a pre-approval?
thank you!

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Profile picture for missjb @missjb

@kdunn44 Thank you, kdunn44, for posting your experience and about your success. Because my RLS symptoms are "different" than descriptions of RLS on the internet, I have been curious what exact symptoms others on the forum have.

I found it very interesting to compare notes with you. I appreciate the detail of your descriptions.

My RLS is also in my thighs--for years only the left and when the right joined in, the left (for the most part) has still been the more troublesome. Then, about 8 years ago, it start to extend up to the top of my left buttock.

Interestingly, when I depended on my massager for relief (before medication and before Nidra), if I held my massager on my right leg (which wasn't hurting), it could stop the pain in my left leg.

I should have picked up, by that, that my experience was caused by something neurological. But, it just "felt" muscular, so I repeated physical therapy, over and over, to no avail (for years).

My RLS never involved jerking or twitching until the last few years. Even now, it's rare and only tiny twitches. It feels more like the "jerk" is stuck and can't get out--so the sensation is an aching pain--that rapidly builds in intensity. I have always described my RLS as painful, even when I didn't know it was RLS.

You and I both started the Nidra last April. Initially, it just worked on the episode I was having. Over time, through "neuromodulation," I started having no symptoms at night. (Yes, miraculous !!!) I think my longest stretch without symptoms at night has been about 9 or 10 weeks. (Still, I faithfully put the bands on, every night).

I do have occasional RLS, laying on the sofa, watching TV in the evening. I tend to get up and walk for these (because I'm still wearing long pants and don't want to be bothered to change to put on my Nidra.)

I take subloxone (a drug used like methadone for people with addiction problems) in a very low dose. It provides a small amount of opioid and it's helpful. I tried to lower the dose after Nidra started working so well, but RLS came back--not terribly, but after having no symptoms at night, I've become spoiled and intolerant of waking in pain.

For me the gabapentin and pregabalin routes had no effect. It is interesting how something works for some of us, but not others.

Before medication/Nidra, I went through the heating pads as well as ice packs. For a while, I had a cooler next to my bed. It was vital when we bought a house that it always had soaking bathtub for hot baths.

Like me, it sounds like your doctor never put you on a dopamine agonist drug. We were both lucky to avoid this!

Like me, you discovered Nidra through your own research. But, my neurologist, is a RLS specialist, so he knew about it. Clever that you knew the correct code.

Another RLS neurologist (Dr Aggarwal in Pittsburgh) suggested I try turning on the Nidra when I first get into bed--before any symptoms--but now that I have few symptoms I don't want to bother with that. Maybe, it would jump start the neuromodulation for some people, which I think I am past needing. But, it is interesting. Next time I communicate with my own neurologist, I'll ask him what he think about this.

Both your story and my story involve worsening symptoms over time. I hope our medication and Nidra combination will work for the rest of our lives. Please let's stay in contact through this forum. It is so great to finally have a Nidra-buddy who is having success similar to my own.

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@missjb
Hello, Missjb, my new Nidra buddy!! On re-reading your note, I remembered I was given a trial of Mirapex and it was beyond horrible! It was like fertilizer for my RLS and it was immediate. I only took it about 5 days! Seriously, violent jumping legs. After that, I was given Gabapentin! I also remembered after reading your note about the leg massagers!! Yes! I had a very large, powerful, heavy one!! I would wake up, sit on the side of the bed and just do that deep massage into my right leg!! (Almost always just the right leg for the past 8-10 years). I would be so sleepy, but would have to do this for 20 mins. It usually calmed them enough to get back to sleep! If not, then I’m filling up the garden tub with scalding water! Ugh! The massager was so heavy, I finally bought me a theragun with all the different attachments! My favorite was the heated attachment. I would sometimes start this before bed while watching tv / as soon as the legs would start to get busy!! That seemed to relax them enough for me to get to sleep once I went to bed! Once I got up to go the restroom as most 70-year-olds do (haha), then my legs would be jumping all over again. So, I either had to walk around the house, pull out the massager, or start filling up the tub! Such a nightmare ! Years and years of this lifestyle is so frustrating! I also sleep with heated mattress pad. That seems to help. Been using those about 20 years. Cold legs are painful legs to me! I also sleep in tight leggings. That seems to help! With my Nidra bands, I’m not having to do any of these rituals. Of course, I still use my heated mattress pad. I can’t bear crawling into a cold bed! Anyway, I’m so thrilled this Noctrix Nidra system works! I pray it will continue! My neurologist was very excited to learn about. She treats so many elderly patients with RLS and hates to keep increasing their Gabapentin because of fall risks. I have told her it works great for me! I’m hoping her other patients can get the same relief!

Well, I have gotta run for now! My husband has a doctor’s appt at 1:20!

Chat soon,
kdunn44 (Kathryn) 🙂

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