Noctrix Nidra device approved

[PoorRichard]

Fyi - I was notified by Noctrix that my prescription for the Nidra RLS device was approved by Medicare (80% payment) with BCBS Medex picking up the balance (20%). Next step is receive the machine & get trained. I also opted in to a study. I'm excited about this and will keep you posted. I'm in Massachusetts, one of the early rollout states for Noctrix.

[SueJohnson]

That's terrific!!!

[Joolsg]

Fingers crossed for you.

[MrCrow]

Do let us know how it's working for you

[Moonwalker1967]

Thanks for sharing. Please update in due course.

[Avart]

I was able to get one a few weeks ago with California Blue Shield after a couple weeks work with my doctor and the company submitting required approval.

I may be a unique case but I have not felt much significant benefit. The device needs some work (they are working on revisions) and it feels cheap and “prototype”. It does what it is meant to do—supply high frequency (tonic) stimulation to one of the nerves in the front of the leg near the shin muscle. It’s basically a TENS unit for all intents and purposes using their own designed stimulation parameters. It feels to me like it’s not hitting even the right part of the leg, my worst ache is always in the deep calf. I use it every night as I’m hoping things will improve over time but no such luck. The stimulation is certainly a distraction which helps somewhat in itself. I bet if there was a way to measure my movement it might help 20-25%. Which as we know with this disease isn’t nearly enough to make a difference. It’s not even close to the relief I felt from first few doses of buprenorphine (can’t tolerate long term and poops out at low dose after first day or two).

The battery life is also totally inexplicably a joke. You only get about 2 sessions of your lucky before it needs a recharge. Sessions are 30 minutes. So can’t really use it in evenings then take it to bed, and if I wake up more than two times and turn it on it won’t work.

Subjectively it’s not anywhere close to the relief of the calf pressure massagers you can get off of Amazon but of course those aren’t meant for use while sleeping and are much more intense.

Look forward to others sharing their experiences. I had really high hopes. It’s $700 out of pocket for me, you can also pay by the month.

[PoorRichard in reply to Avart]

That's very disappointing to hear. I will adjust my expectations. (I wonder how on earth it got FDA approved? )

[teakabeagle in reply to Avart]

I had the same results and do not feel it is worth the mi ey until they vastly improve the battery life and the unit itself. It is very bulky. I can’t believe they can’t make that unit smaller with a better battery life.

[707twitcher in reply to Avart]

Avart, I am waiting on insurance approval. If approved, I was planning on using it for a week or so before I try lowering my buprenorphine dose. What were you taking for RLS before, and did you continue it? It sounds like you are relying solely on the Noctrix unit?

[Avart in reply to 707twitcher]

Tried opioids couldn’t tolerate but helped only partially …. Now just taking clonezepam but doesn’t work all that great . Can’t tolerate gaba or pregaba due to weight gain and foggy head and depression. . Those didn’t work at doses I was willing to use. Maybe neupro as doc says less risk of augment. But already got off prami

[SueJohnson in reply to Avart]

It does not have less risk of augmentation. Per Joolsg. Dr Berkowski has confirmed that the paper talking about low rates of Augmentation was flawed.It refers to a 2011 study by Oertel and a study by Trenkwalder in 2017. It was sponsored by the drug company. Claudia Trenkwalder who also authored a paper saying this has now changed her position and talks against ALL dopamine agonists.

[Avart]

my experience may be unique as I have very large calves and shin muscles and the FDA results were seemingly quite good—granted it’s very hard to “blind” a device like this I would imagine significant placebo studies.

[SueJohnson in reply to Avart]

My understanding is you can return it for full credit within 4 months.

[Merny5]

PoorRichard, Have you received your Notrix machine yet? When you have used it long enough, will you please post your opinion?

[PoorRichard in reply to Merny5]

I'm on week 1. Will post soon.

[PoorRichard]

Hello colleagues - I have been using the Noctrix Nidra device for 3 weeks. I am finding it helpful and I recommend anyone with mild to moderate RLS to try it, if it's available in your state (US only for now). My RLS is mild compared to many on this forum. I was managing with a very low dose of gabapentin. That said, I'm very sensitive to medications so my 200mg gabapentin may be the equivalent to your normal 300-600mg dose. Initial set up requires an in-home personalized session with a technician. The strength of the nerve stimulation is customized for each user. I have found that even after my personal calibration session, I tend to use it at its lower setting (level #2 or #3). I do not need it every night. I attached the pads at bed time and then activate it if I sense the onset of RLS. (I have eliminated many triggers, so my RLS is sporadic). Using the device, I have titrated my gabapentin to below 50mg (I use liquid gabapentin, so it's easy to fine tune the dose). I expect I will be off gp entirely soon - but I'm not ready to cut the cord. Noctrix have been good at soliciting feedback. They're obviously interested in improving the technology and features. Noctrix are aware that the device needs some modifications for ease of use. Mechanically there are some minor issues. For example, it's awkward to adjust the intensity during use and the charging cables are frustrating to connect. I read a complaint on this forum about the battery charge not lasting long enough but I haven't had that issue since one session (30 min.) is all I have needed. The battery is good for a bit over 2 sessions, depending on the nerve stimulation setting you're using. Noctrix recommends starting at level 5 and adjusting it down. I have not done that because A) my symptoms don't call for level 5 and B) it's bothersome to change the level during use - after all, I'm trying to get to sleep, not adjust an electronic device. So, I set it at level 2 or 3, when needed, and so far, so good. I am traveling tomorrow to the west coast. I would have liked a handy travel case but it'll have to do as-is. I'm curious how my travel will affect RLS and whether the Nidra device will be effective. Travel and time zone changes can wreak havoc on us. I'm packing gabapentin just in case!