Nidra gadget for RLS

[Mason21]

has anyone heard about this nidra technology which is available now in selected states in US! this gadget apparently is a wearble device non- drug therapy for severe to moderate RLS. please anyone comment to it since if it is true, it will be a miracle healing for all of us who are suffering from this terrible condition.

[Madlegs1]

This is from their website. I find using a massage gun on the backs of my legs does the job.

"The prescription therapy includes a pair of neuromodulation devices worn on the lower legs that electrically activate the peroneal nerves bilaterally to produce tonic, sustained muscle activation, and suppress symptoms of RLS. The mechanism of action behind this therapy was also published earlier this month in the Journal of Clinical Sleep Medicine."

[SueJohnson]

There have been a number of posts about it but it is only available in the US

[MrCrow in reply to SueJohnson]

Does it really work? Is it better than and 30 dollar tens unit?

[MrCrow in reply to MrCrow]

according to this video it’s supposed to be:

m.youtube.com/watch?v=t05Kg...(Not working as expected?)

[SueJohnson in reply to MrCrow]

Put Tomac in the search box and you will see all the posts about it including people who have tried it.

[LanaCSR in reply to MrCrow]

I haven't tried this new unit, but I tried TENS unit years ago (before my RLS was as bad as it is now), and the TENS unit didn't work for me. I plan on looking into it as it is available in my state. If I end up trying it, I will post my results on here.

[Mason21]

my neurologist from australia actually recommended that gadget to meduring mu recent visit I had with him last week. It is just unfortunate that apparently it is not yet available for international market specually here in Australia. my husband who has been researching about this actually sent an email to the companh if we can go to US to buy this gadget but unfortunately they said it is nit possible. Iam disperately hoping to find such alternative because I had enough of the side effects of gabapentine and my neurologist is recommending the opoids instead which I am not very keen.

[grassgree in reply to Mason21]

The device was recently approved for use in the US, but it is not yet available in every state. Training and manufacturing will take time, but it is a hope for all of us.

[ID158 in reply to grassgree]

I met with my neurologist a few days ago. He said he had contacted them to find out when we would get it in Colorado (USA). They said hopefully in January 2025. Only available in a few states currently.

[grassgree in reply to ID158]

You can get your name on the list by writing to [e-mail]. They'll answer your email and give you a list of doctors in your area, when the time comes.

[ID158 in reply to grassgree]

Right, I should have mentioned that part too--I'm on their list.

[Allyp69]

Like the idea of nidra..need to research it...Therspulse still works for me but is not a cure

[grassgree in reply to Allyp69]

Although nobody is saying it’s a cure, the clinical research indicated that those who stayed with it got better and better results, possibly because the neuropathways were altered. It’s still early days, but clearly the investors are happy.

[grassgree in reply to grassgree]

To clarify, I was referring to the Nidra device, not Therapulse. That might have been confusing.

[D4nc1ngqu33m]

Hi there there is this you could try l use it to block pain signals for sciatica and RLS depends on how bad your legs are if l use before they start l can usually prevent myself going through having to get up and move around it's well worth a try.

May help to ease your legs not a cure but better than medication.

[RLShelpforme]

I am currently in a study where I wear the Nidra bands. Sometimes I think the bands are helping and sometimes not. Kaiser, my insurance, won’t approve my request to use the Nidra bands. Too experimental and expensive - $7,500. So I am able to use them during the study for 12 weeks. I’ll see how it goes. I would like to try the Therapulse also but I wasn’t sure I could get it as I am not in the UK.

[Elisse3 in reply to RLShelpforme]

The website shows the USA flag so you should be able to purchase one and refund if it doesn’t help

[Eryl]

Any gadget is only going to be a distraction from the symptoms and will not address the cause of RLS

[PoorRichard]

I am using Noctrix Nidra one week so far. I have intermittent RLS and it seems to work well for me. I like that it's drug free and you only turn it on when symptoms arise. Too soon to know if it's a long term help. Stay tuned. I'm in Massachusetts. I worked with my sleep doctor on applying for the unit and got Medicare and Blue Cross Medex to cover it 100%.

[SleeplessinNC]

I’ve been in the process of obtaining this for over a year since my first inquiry. I’m in the US in North Carolina. I’ve sent in the Rx from my sleep neurologist, the company filed my Medicare Advantage plan but my share was going to be about $1500 or so. I don’t quite qualify for full/free assistance (they offer a payment program) so they are going back and forth trying to help find a lower payment that would work for me.

I’m pretty desperate. RLS was up to 12 hours a day, 7 days a week since augmenting on DA meds. Have tried a long list of RLS meds, gone through DAWS, and have other spine and health issues.

I am now on Vimpat and methadone and remain hopeful that I’ll have the opportunity to try the TOMAC device. Best of luck and keep the group posted if you try it. 😊

[Solarlights in reply to SleeplessinNC]

Hello, I'm seeing my RLS Dr in Sept and I have asked her to check on the device and I would like to try the devise. I will let you know!

[SueJohnson in reply to Solarlights]

I checked 15 days ago and at that time it was not available in Oklahoma nor on deck for that state. In any case I seriously doubt it will help while you are still on requip. Have you come off it?

[Solarlights in reply to SueJohnson]

Hi, I've already tried pregabalin, it didn't help. I'm taking Horizon and 2mg of Ropinirole. I haven't had as many episodes like I did.

I thought the device would help when I do have an episode.

When I have an episode, I could be up for two days with RLS and pain. I'm constantly walking because I can't lay down. Takes me a week to get over the RLS episode.

Thank you for the advise given to me.

[SueJohnson in reply to Solarlights]

You tried it while you were ropinirole so no wonder it didn't help. Also your Horizant won't help much until you are off ropinirole. Horizant is basically gabapentin and and pregabalin and Gabapentin are interchangeable. You are still having episodes.

It is great that you reduced it from 4 mg to 2 mg but you need to completely come off it so you don't have any episodes in the future.

Check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

If what I suggested is still too much to reduce, you can get an inexpensive jewelry scale on Amazon for$11 that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks

[SueJohnson in reply to Solarlights]

If you are still on requip here is how to come off it. Reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that is less likely to lead to augmentation but that has been disproved.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 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)

The TOMAC device device may (or may not) help but having the medicine to completely control your RLS is a lot easier and worth a try especially sin the TOMAC device is expensive - $7500 and many insurances don't cover it.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[Oregonmike]

It would be great if it worked.

[pages2tx]

I've been using the Nidra device for approx 6 weeks. It's more of a nuisance really. When I first started using the Nidra straps the pins/needles sensation was too strong. The sensation would last 1-2 hours AFTER I removed the straps. It was awful! I had the level reduced and now it is tolerable. I don't believe it's made a bit of difference. They think you're gonna put on the straps and fall asleep. NOT !! I still have to walk around waiting for the RLS to subside on top of feeling all the pins/needles from the straps.

I have RLS approx 8 x day. 3x's during the day, 5x's at night. Meds are out for me, I've had too many serious reactions. I had my first IV Iron Infusion approx a month ago, lots of side effects from that but hopeful it will help in the long run.

Good luck to you!

[MrCrow]

You're the first who's endorsed it strongly so far. I wonder about your history with RLS so far. Is yours moderate to severe? I ask because there are a few who say it would probably be useful only for mild cases.

Also is there something by the same company that works for the arms?

[Mason21]

thank you so much for this very encouraging and hopeful information. I appreciate it very much and thank you so much for your prayer, may the device give us the help that we very much needed while waiting for miraculous cure for this sickness that we are all suffering. God bless you and your partner.

[DogBella]

My doctor asked me if I was interested in trying this product. It becomes available in California on Oct 1 according to her. She will order it for me to see if I can get relief. I am willing to try it. She gave me information stating 91% of patients reported improvement. I don't know how long it will take to begin using it.

[Mason21 in reply to DogBella]

Thank you so much for sharing that information. I am still hoping that soon that gadget( nidra) will be available in Australia. I have severe restless legs for almost ten years now, tried dopamine drug end up having augmentation, on gabapentine now which is not working at all, started adding oxycodone on top of gabapentine having good sleep for 2 nights since I started this opoids but now suffering with dizzines and nausea every night. I do not know whatelsevto do except keep praying to God for hope and strentgh until miraculuos cure will come. sorry for whinging but thank you anyway and please let us know if it will work for you.

[DogBella]

I can understand your condition. I spent several years with intense pain getting off the augmentation of Ropinerole. If, and when I begin this therapy, I will let you kow my resuts.