Restless Legs Syndrome (RLS) Discussion Board

Nidra is now FDA approved. I dont know if it works but I want to try, I have been working with the Noctrix rep who is trying to get it approved from my insurance company - what a joke! It's taking months but I'm still trying. There is now an appeal letter my doctor has to sign. Without insurance I was told the device is over $7,000.00. That is a lot of money for something that I dont even know will work. https://nidrarls.com
I continue to struggle.
Frustrated!

I totally understand your frustration. I have been through two "prior authorization" ordeals already this year. The first one was for a med that my co-pay is about $5/month. Both were prescribed by my doctor and the insurance company decided that they were better qualified to practice medicine and cancelled my prescriptions. Why can't we go back to the days where doctors and patients decided what was the best way to treat a condition without the interference of the insurance companies and the government?

So true!
Thanks Steve

Rustsmith wrote: Fri Jul 19, 2024 1:37 am I totally understand your frustration. I have been through two "prior authorization" ordeals already this year. The first one was for a med that my co-pay is about $5/month. Both were prescribed by my doctor and the insurance company decided that they were better qualified to practice medicine and cancelled my prescriptions. Why can't we go back to the days where doctors and patients decided what was the best way to treat a condition without the interference of the insurance companies and the government?

This is just so frustrating.

I would love to know if you get this approved as I did hear about it and I also heard about the price which is way too expensive for me.

If you get the devise please let us know how it goes and if it works for you. I have heard it doesn't stay on for more than a few minutes and that is what worries me. I use my tens machine and it does help, but once it turns off the RLS comes back. I am worried this will happen with this device too.

Good luck ~ Lissa

I'll be sure to keep you posted.

So my doctor wants me to determine if I can have this device shipped to Canada .
The trials seemed very promising and they've sure got a slick website that seems to make alot of big life changing claims, but the price and availability still seem to be an issue .

Has this device made any progress and/or gained momentum with RLS patients in North America ???

The device received FDA approval for the treatment of RLS in the US using the tradename of TOMAC. I have no idea what this means as far as Canada, but a doctor in the US can write a prescription for the device. As for the price, it is a patented produce, so the price is going to be steep anywhere and that could be a factor for Canadians interested in getting it.

I couldn't agree with Quietlegs more. A lot of money for something I do't even know if it will work. If I knew it was the whole solution I would order one today. As an engineer I always thought some kind of feedback to the impulses we feel would work (not sure that is what this "Tonic Motor Activation" does) but at this price and no trial I can't see anyone without Cadillac insurance being able to afford a test. If any of you can manage to obtain one please post your experience.

I remember the vibrating blanket that had FDA approval folded because of its price and it was a small fraction of what this costs. I think noninvasive external treatment with no side effects beyond discomfort or a rash would be lot easier to get FDA approval than meds. Then there is warranty, $7000 and it might last a couple of years?

Apparently they strap to your upper calf. I used to think when my RLS was milder the impulse was in my calfs. Now that it is really bad I am sure it is in my thighs. Did it move? Who knows. It occasionally manifests in my arms. Strange.

This is the first I've heard about Noctrix and just scanned the site. A review coauthored by a doctor I had worked with in the past closed with "TOMAC is certainly not intended to eliminate the need for important pharmacological treatments for RLS including alpha-2-delta ligands, IV iron, and opioids."

stainless wrote: A review coauthored by a doctor I had worked with in the past closed with "TOMAC is certainly not intended to eliminate the need for important pharmacological treatments for RLS including alpha-2-delta ligands, IV iron, and opioids."

Important. Thank you for noting that.

Stainless wrote: Fri Nov 08, 2024 3:47 pm I couldn't agree with Quietlegs more. A lot of money for something I do't even know if it will work. If I knew it was the whole solution I would order one today. As an engineer I always thought some kind of feedback to the impulses we feel would work (not sure that is what this "Tonic Motor Activation" does) but at this price and no trial I can't see anyone without Cadillac insurance being able to afford a test. If any of you can manage to obtain one please post your experience.

It is far from ideal but they do offer a 45 day trial of the device, with a full refund if you send it back.

I did not see the 45 day trial. The problem I see is according to their data it takes time to see the full benefit. 8 weeks (56 days) averages a 34% reduction in score. 32 weeks is about 50%. My RLS is so all over the place night to night, I don't know if I or their specialist could evaluate my score in 45 days.

It would be really nice to be able to rent one, even at a high price, to evaluate. I would jump at that in a minute and ultimately they would probably make a lot more profit as opposed to the few who will drop $7000 (assuming that is the correct cost) to find out. I'm still intrigued.

I did submit my info to Noctrix and quickly got a response. Unfortunately they do not yet support my area (East Central FL). Maybe one day.

Last night I was sleeping better than usual. Got up for a 4 am, moved down to the bottom of mattress and slept on my stomach. For me it's kind of like a weighted blanket and restricts leg movement. I was abruptly awakened when I kicked the heck out of a post on my 4 poster bed. Goes to reinforce how even if I'm asleep my legs aren't.

Many years ago before my symptoms were better treated I used to lie on my stomach. Legs bent at the knees and feet in the air... waggling.
Pushing my knees into the arms of the couch made holding the position easier for longer.

I have had the Nidra for almost a year. It works for me every time. Usually, I only need one round of 30 minutes. Sometimes, if I get symptoms in my arms as well I have to do two rounds. (You still wrap it around your legs.) I still take 5 mg or Methadone. Though the product return time is within 45 days, I would guess you will know if it works for you because as soon as you use it, once your symptoms start, you will see how quickly it decreases your symptoms or NOT. Personally, just knowing I have something to stop the symptoms quickly and consistently made me feel much less anxious about whether I could sleep that night. It really improved my quality of life. Their customer support is excellent.