Nidra TOMAC experience

[707twitcher]

I started with the Nidra bands a week ago. (The company name is Noctrix; their system is either referred to as Nidra or NTX100 TOMAC.) They suggest only using them after RLS symptoms start, but they also say that some people have success using them prophylactically at bedtime with no symptoms present. I have tried it both ways. Most people, including me, get two 30-minute sessions on a charge of the battery. (If a very high setting is needed, they likely won’t last for two full sessions.)

Noctrix support says that most people need a couple months or so of use to reach peak effectiveness. My goal is to be able to reduce my buprenorphine dose further or stop it altogether.

Because of the need to have RLS symptoms occurring before using the bands, I have cut my buprenorphine dose down to .2 mg from .4 mg. At the lower dose and without using Nidra, I can sometimes make it through the night without any symptoms. But more often than not I will need more buprenorphine within 3 hours of going to sleep.

When using the bands at bedtime without symptoms present, I made it through the night without symptoms three times, and twice needed more buprenorphine around 1am (bedtime is ~ 10pm). I don’t really know if using the bands helped or if my results would have been similar without them. But I believe getting by with no further meds three nights out of five is likely at least partly due to Nidra. I think this is the regimen I will continue with.

Twice I waited until I woke up with symptoms. Once, the first session with the bands gave relief for 2 hours and a second session gave relief for another hour. But I ultimately needed more buprenorphine around 2am. The second time, I got no relief from the first session and immediately did a second one. I got relief, but only for half an hour before needing more buprenorphine.

Twice when using the bands at bedtime they actually caused RLS symptoms to appear. Doing a second session relieved the symptoms. I understand that this is not uncommon. Stimulating the peroneal nerve (what the bands do) apparently can result in triggering symptoms if not already present (that’s my take on this).

I will continue, and hope that results improve. For now, it is causing me to lose more sleep as I try the bands but eventually need more buprenorphine.

[SueJohnson]

Interesting. Do keep us informed as more time passes.

[Rayme]

Thank you for sharing the info. I hope it improves. As we all want to reduce medication it's good to have your thoughts on it.

[TheDoDahMan]

Yes, we appreciate your research. Should we uncross our fingers hoping that it would be a wonder cure?

[davchar23]

Dear 707twitcher,

I am happy to see you are still doing excellent and interesting RLS research and look forward to hearing the next episode on the bands

Hope you are well

Davchar

[Jumpey]

Good luck with it.Keep us posted.

[Ticki]

thank you for that information and I understand how hard it must be going through the process of working that system out to benefit you fully and it’s gotta be quite the trial. I do pray you get better results after few months have passed and please do report on it getting better if that happens.❤️‍🩹

[Munroist]

Thank you for the updates and careful testing. I tried a TENS type foot massager which worked for a friend of mine and had a similar experience i.e.. that it actually caused the RLS to start.

[Mason21]

thank you so much for sharing your experience with nidra. I will have my consultation with the Pain Doctor on the 15th of this month to start with opiods medication which I am not very keen at all but I reach the point that I do not have any other option since after augmenting from promepixole the gabapentin is not giving me any relief at all so nothing left with me to try except the opoids. I am very keen to try nidra once we will have an access with it from Australia, hoping it will help me not to be totaly dependent with the opoids the rest if my life. May God help us all, again thank you so much for sharing your experiene, it’s very helpful

[707twitcher in reply to Mason21]

I would advise asking your pain doc to prescribe subingual buprenorphine. Here's something from Dr. Berkowski that Joolsg posted recently that tells why:

relacshealth.com/blog/treat...

There are two basic choices with buprenorphine - patch or sublingual. I've used both. I strongly recommend sublinguals to start, because it may take a while for you to experiment and find the optimal dose. With the patch, when starting or increasing dosage, there is a long lead time in the buprenorphine building up in your body to reach an effective level (over 24 hours in my experience). With sublinguals, you can start low and add more every 30 minutes or so to find a level that relieves your symptoms completely. A lot of us here get by with less than .5mg, but many need 1 mg or more.

[Mason21 in reply to 707twitcher]

Dear 707twitchet,

I did read the comparison between the Methadone and Buprenorphine by Andy Berkoskivit it is exactly the information that we need bfir I will the Pain Doctor tomorrow. I cannot thank you enough for sharing your own experience and insights about buprenorphine. My Neurologist mentioned to me several time during my recent visit about having methadone but now I will certainly convince them why I should be prescribed wth buprenorphine instead of methadone. I will certainly insist with the sublingual instead of patch. You and the rest of the people sharing your knowledge and personal experience with RLS are saving so may lives in this forum and I am certainly one of them. God bless you people.

[PoorRichard]

I've been using Noctrix Nidra for about 2 months now and find it very useful. My gabapentin usage is zero. My RLS was mild but I also watch triggers (sugar, carbs, over/under exercise). I am pleased with the device.

[Merny5 in reply to PoorRichard]

So glad that it is working for you!

[Mason21 in reply to PoorRichard]

hi Richad, thank you so much for sharing your feedback with nidra. it is certainly very helpful for me, giving me hope that once I got an access to it in Australia I might be able to try it with my severe RLS. please keep us informed of your nidra experience.

[PoorRichard in reply to Mason21]

You should also search this forum for others' experience with Noctrix Nidra device. I think effectiveness varies.

[Merny5]

Thank you so much for reporting on the TOMAC. My insurance refused to pay for the device and I have been considering paying for it out right. So your research is crucial to my decision. Please keep us posted.

[grandma_of_7 in reply to Merny5]

I'm also considering paying out of pocket if my insurance refuses.

[SethLinn]

Thank you for the info. Did anyone ever explain why TOMAC can take up to 2 months to start working? It seems like something that would start helping instantly.

[707twitcher in reply to SethLinn]

It sometimes helps immediately, at least for an hour or two. I think over time it will last longer. Maybe the body adapts to the stimulation differently over time

[lorri214]

how much did you pay for the device.

[707twitcher in reply to lorri214]

I believe they charge $7500. Fortunately Medicare covers most, and my supplemental insurance picks up the balance. I suspect the cost of manufacturing the devices is pretty low, so they are really charging for their effort in working with your doctor to generate the Rx, training session when you first start, follow-up calls, etc.

[lorri214 in reply to 707twitcher]

My dr. ordered the device for me on Oct. 1. She told me to call them after Oct. 15 to find out the status of the delivery. I was unable to get in touch with them. When I called the number they wanted to give me a free $100 gift card. They did not know about the device. I am trying to get a phone number for them. By any chance, do you have a number I can reach them at. I would appreciate it. Thanks.The phone number my dr gave me was 1866-EASE-RLS

[grandma_of_7 in reply to lorri214]

Hi, did you received the Nidra? How's it going? Dr just ordered it for me. Had to give up on opioids due to bad itching. So now I'm forced to get by on gabapentin for at least a while. If that isn't enough, I'm pretty sure Lyrica will be next. I'm going to check the site here to see if you posted about it elsewhere!

[lorri214 in reply to grandma_of_7]

I received the bands this week. The people from the company are very supportive. After I received the bands someone came to my home to program them. I am having a problem getting them to work properlyl. I spoke to their representative today and she wants me to make a video of how I connect them and she will troubleshoot. When you get the bands you are assigned an adviser to help and assist you. My adviser is excellent. I text her and she gets back to me immediately. Today I am making the video for her to trouble shoot. Will let you know how I make out.

[707twitcher]

Here's the info I have. You might be in a different area, so you might have a different rep, but I'm sure Bonnie can get you to the right person.

Bonnie Chan

Patient Access Team

Tel/Text. [phone]

email: [e-mail]

For me, it took several weeks after my doctor submitted all the paperwork before I heard from them. Then they sent me the device and put me in touch with a local contractor who partners with them to do the one-hour training session when you pick it up and they calibrate it. In my case, the contractor is a sleep services company (didn't know there was such a thing...).

[lorri214 in reply to 707twitcher]

I just received my bands this week and the local contractor came to my house to program them and show me how to work them. I am having a problem getting them to work properly. Today I am sending a video to their representative to troubleshoot. Did you have any problems when you first received them.

[grandma_of_7]

Hi, I gave up on buprenorphine a few days ago - it caused an opioid itch. I had switched to bupren from methadone when that caused the same itch.

My dr has ordered the Nidra. So I read your post with great interest. After using opioids for almost 3 years it's going to be a huge adjustment to micromanaging every RLS sensation - what I mean is - being aware of it, assessing it, etc. I was so spoiled - I almost never even thought about RLS! You must have quite the severe case to be on bupren + the nidra. My dr is increasing my gabapentin, I have hopes that will be enough. I suspect it will not be. The only good news about it is that he will listen to me if i follow instrutions and find the RLS is too much. The next step is to stop the gabapentin then add Lyrica.

I see it's been a while. How's the Nidra doing for you?

[707twitcher in reply to grandma_of_7]

Lyrica is pregabalin, right? So it is basically interchangeable with gabapentin. As Sue frequently points out, some people react a little differently to one vs the other. The main reason most switch to pregabalin is ease of taking it. With gabapentin, once dose is over 600mg you have to start breaking it up, with two hours between doses. Pregabalin dose is 1/6 gabapentin, and can all be taken at one time. Are you getting any relief now? What dose are you on? I suspect Nidra will work better for you if you’re getting some relief but just need a little more occasionally.

[grandma_of_7 in reply to 707twitcher]

So it seems that you and I are getting entirely different information. My dr thinks they are completely different. And my dr doesn't agree about when one dose is over 600 - I'll be taking 1,200mgs at bedtime, with a 300mg pill earlier in the evening, and after 5 days if I'm not getting relief, it will be 600mgs at bedtime. This is all while awaiting the Nidra. I miss the buprenorphine so much, it helped me sleep so well!

[707twitcher]

Use the Search Health Unlocked bar at top of page and look for pregabalin or Lyrica. (Or just Google it) My understanding is that Lyrica is the common brand name of Pregabalin. Everyone on this site talks about it being interchangeable with gabapentin. Also look in the search bar for gabapentin doses - again everyone says it isn't absorbed in doses above 600mg at a time. I don't know how much faith you have in your doctor, but I would definitely trust Sue and others here when it comes to this topic.

If you were on DAs for a long time (like pramipexole), there is some chance that gabapentin or pregabalin won't help you at all because of damage done to dopamine receptors.

[mmb8083]

I just received my insurance denial letter today. They wont cover the Nidia

[707twitcher in reply to mmb8083]

I'd find somebody to complain to. If Medicare approves this, I don't see how other insurers can get by denying it. Greedy bas**rds 🤬