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Restless Legs - Any suggestions as seen many doctors and medications
Hi, I’m new to Mayo Connect but here goes…I have had RLS (Restless Leg) for about 40 years and it started with just occasional problems to now it’s daily at 66 yrs old. I had an unacceptable reaction to a few different meds like Gabapentin and also other meds used to also treat Parkinson’s and the last one they wanted to try had so many BAD side effects that I said no as I have reactions to many types of prescription medications including over the counter Antihistamines, Aleve etc. I do take extra B-complex, Vitamin D, Magnesium, Potassium, tried Iron etc. I often get leg cramps or ankle and foot cramps and remember my mother having them all the time. It doesn’t seem to make a difference if I exercise or not and mine will start late afternoon or evening. I toss and turn at night and I’ve actually made a hole in my sheets before because of moving my legs/feet so much. Occasionally my arms will also bother me. Heat, support stockings, warm shower or bath can help sometimes, but have noticed what works today will not work tomorrow so it’s what do I want to try tonight as again its rare if I skip a day. Just adding to my leg issues … 8 years ago I had an extreme 3 disc fusion in my lower back that was successful, but I woke up in the hospital with both legs and feet numb, which is common, but mine did not go away. About a year after surgery a neurologist said I had some nerve damage in my legs which might or might not go away, plus ankles very tender. Numbness is now mainly in lower calf (so much better) and feet plus ankle tenderness. Told I had neuropathy probably from the back surgery. I can live with sore/numb but the RLS is bothering and need to find relief. I recently moved to another state and my new doctor (after he touched my ankle and I nearly jumped off the table on him) had me go to a neurologist. With his testing he said I did not have neuropathy and he ordered spine CT which was fine, blood work including for RA etc. and all fine. Anyone, have suggestions? Again, I can live with the numbness, but the restless legs are what bother me. Not only is it uncomfortable/ache for me, but I start bouncing my legs, feet, Stand up/down, walk around and back to tapping my feet etc. so I annoy everyone.
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I finally, after 18 mos, got my insurance to include the Nidra TOMAC device. $1000 copay plus $10/mo. So I need to ask the community how well it's working for them and is it worth it. I am currently on pregabalin 100mg and doing fairly well sleeping with some agitation but no uncontrolled movements except for and occasional bad night around once in 10 days or so. But I have had good periods like this in the past only to have bad periods where I need to get up and walk during the night for 10-15 min. Maybe this would allow me to reduce the medication or just make for better evenings and sleeping. I don't want the expense or the complication of learning how to use unless there is a strong likelihood of improving my living
I've had RLS for many years, and the only thing that helps me get
some sleep is pramipexole 0.75mg (prescription).
@beetle1 Congratulations on joining our community of Nidra users : )
I'm curious--what kind of insurance do you have? I think everyone wants to know details of insurance experiences, if you don't mind sharing.
I have Medicare and United Health Care supplemental and had no out-of-pocket expense, personally, for my Nidra, which I got in April 2025.
My expert RLS doctor told me that the Nidra doesn't work for everyone. Some of his patients have tried with no success. So, there is a possibility it won't work for you.
Hopefully, however, you will have the experience I have had. It has worked wonderfully for me--made an unbelievable difference in the quality of my life.
You may not know the total worth of its effectiveness, however, until you until you have used it for a while.
Like you, when I started I was on medication that was helpful, although not "enough" by itself. I don't believe, for me, that Nidra can overcome RLS without effective medication as part of the picture.
I found there are 2 ways it helps me. First, of course, it stops an episode, when these occur. I turn it on and go back to sleep (immediately). Secondly, over time, (through a phenomenon called neuromodulation) it also reduced both the frequency and severity of my episodes.
Like you, I circuit in and out of symptom severity. Sometimes (like if I overexercise) RLS is quite severe and nothing helps very much (not Nidra, not medication, not the combination of the two.)
On the other hand, because of Nidra, I've had streaks of time (up to 6-8 + weeks) when I've had no RLS at night, at all—some in the evening, laying on the sofa, watching TV, but none at night--so I’ve had much, much, much better sleep because of my Nidra.
After a really good stretch (abt 6 weeks without RLS), I tried to reduce my medication and I started having symptoms again--so I gave up the goal of less medication in favor of more sleep--more "RLS-free" sleep.
About 6 months ago, I was sleeping an average of 6-6.5 hours per night. Now it's about 7-7.5. That has also made a huge difference how I feel in the daytime.
At the beginning of using Nidra, maybe it took a month before my brain got into the swing of using it (having a quick response etc). RLS is all about our brains, remember. For me, it wasn't instantaneously a miracle. It took time to get used to it, subconsciously. Then, it was months before I started to have night after night with no symptoms, at all. Nidra retrains our brains and for me this was not instantaneous. I was nonplused the first time I turned mine on. I didn't have a WOW "this is great!" beginning. It took time for the benefits to get better and better.
I just used it consistently without very much thought (trying to avoid worrying and self-questioning--just keeping an open mind). I recommend anyone starting out take the same approach. Bringing any anxiety into the mix when it's about sleep is always counterproductive.
Would it have been worth $1000 to me, had I paid out-of-pocket? It would have been worth $10,000! I've had horrible RLS and suffered substantially since 2010. I realized death was better than how I was living--and, I cried and cried and cried.
Now, if the house caught on fire, I would gab my Nidra on my way out! It has significantly improved my quality of life. I love my Nidra! More effective than I ever dared to hope.
The pads we use are $75 per month (for 4 pads). I've had periods they lasted longer than a week--in case you will need to pay for these out-of-pocket--be careful with them and they can last longer. Always cover with the plastic shields (printed side down) as soon as you take them off. Press the pad-part down firmly when you put them on. Also, be careful with the velcro--avoid getting lint/crud etc on it.
Please do post your experience for others to learn from. Nidra (according to Noctrix Company) works for the majority of users--so very likely you will be touting your success after a while and we readers will want to hear about this. I'm crossing my fingers you will have the same success I have had!
@missjb
I have Medica which is a cost sharing plan. Live in Wisconsin and a big part of the holdup was there were no codes set up for this and there needed to be negotiations between Medica and Noctrix. The rep told me I have until November 20th before the pre-authorization ends. Checking with them if that is a insurance thing. Anyway I want to make sure I want this before proceeding. I was told there would be a 45 day trial period where this could be returned, although I don't know how easy that would be But it sounds like that might be too short of a time so I would probably just have to pay and hope for as good of a result as you have had
@beetle1 Hi again.
Nidra has only been available for about 3 years. Research on TOMAC technology has been going on much longer. But, it's really still early-days in terms of prescribed users, so I can understand how Medica lacked a "code."
I consider myself a pioneer Nidra user ; ) I read about it in the Medical literature on PubMed and I cold-called the company in 2024, asking how I could get one--and then I had to wait another year before I was "allowed" because they rolled out availability on a state-by-state basis--and I didn't live in the right place.
I believe you will "know" within 45 days, if Nidra works for you---whether, or not, turning it on will stop your RLS episodes and let you get back to sleep quickly.
The decrease in frequency and severity of RLS, when I heard about this--I was skeptical and I didn't consider it possible for me. So, when it happened, it was the most wonderful surprise (because now I have many nights--the majority of nights--without waking up, at all). That part took (for me) months. I don't know how many Nidra users experience this--what kind of percentage. I just know that I did.
Having this is great, but it's not necessary every successful Nidra user experiences. "Success" is determined by whether Nidra can stop a RLS episode.
Someone on a different thread in this forum recently posted about how soon she experienced additional benefits after starting to use Nidra (for her it was almost immediately).
We all can react differently. You have to try something to know about yourself.
The Nidra's efficacy is based on a lot of research. If they chose 45 days in their return policy, it's because that cut-off time period is best to evaluate whether Nidra is successful--based on research.
I don't know how problematic your RLS is for you. I do appreciate the $1,000 is a lot of money--particularly if you feel it's a gamble or opening yourself up for a hassle, trying to return.
In order to successfully sell their product, Noctrix needs to be sure their reputation is good--with doctors, patients and with insurances. Doctors would stop prescribing Nidra's if their patients told them they lost $1,000 after being told the device was returnable (before the 45 day mark), but it wasn't--or if the return was a real hassle.
Doctors are necessary for every single Nidra sale--it's prescription only--and they would not like patients coming back to them complaining about a $1,000 scam (or even if returning was an extreme hassle) and then blame the doctor for writing the prescription.
Noctrix understands those dynamics.
I have raved in other postings about how great the Noctrix customer service is. I have encouraged others to call and talk to someone there to answer questions. It's easy to google their phone number (Noctrix is in California). Why don't you call and ask about the return procedure and reassure yourself--find out if there is anything actually worrisome?
Call them and say "I'd like to talk to someone about how the return policy would work, if I need to use it. What, exactly, is the procedure for returning--what exact steps are involved?"
This return policy is something I heard about--from someone in Noctrix's billing department and my RLS mentioned it to me. It's a known part of their business model as far as I can tell.
RLS doctors meet at their conferences and informally trade information about how Nidra is working in their patient populations. Noctrix wants this exchanges to be on the positive side, even if the device won't work for everyone--it's also about company reputation.
In June 2026, Noctix was sold for $340 million. Nidra is a new device and RLS sufferers (and their doctors) are still just learning about it as a treatment option. Do you think the new owner (a company that makes CPAP equipment) would risk Noctrix's good reputation (new, still being built) to hassle a legitimate return? I believe they want to sell as many Nidras as possible and have happy customers and a good reputation.
I understand investing $1,000 would make anyone pause and really consider if Nidra is a worthwhile purchase. I think you have asked good questions and brought up valid concerns.
I hope sharing my experience is helpful to you. In the end, it needs to be your decision how to proceed and I wish you the best of luck, no matter what you decide to do.
My personal experience with muscle cramps is that I will have cramps in the night if I skip meals or if I don’t eat well during the day I will have muscle cramps. Secondly the best treatment for muscle cramps is Vitamin E, 400mg one capsule once a day, for 10 days. If you find it helpful then continue for a total of 30 days with one capsule a day. Then repeat the same after 6 to 8 months