there is a new device which has been trialled in the US.
nidrarls.com/for-healthcare... It basically works by stimulating nerves to the legs. Its use seems limited to the US. Prescribed by a neurologist and has trial basis.
I tried to enquire about it but website requires a US zip code. Anybody in the US involved in trails, use it or have comments.
On the basis of its action it is plausible that it may be helpful. Need to get wider distribution.
Thanks for any info.
There have been quite a few posts about this: it's available prescription only for $7500 currently only in a handful of US states. Your profile doesn't say which country you're in.
See e.g.:
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
Many thank, David
I believe from previous posts that you're in the UK: Noctrix are only rolling the Nidra out slowly in the US. It's unclear how many US medical insurers will be prepared to pay the $7500.00 price.
There's currently no indication as to when/whether it will be available here (and at what kind of price if it is).
It works by electrical stimulation of the peroneal nerve, and has certainly had some success in patients with refractory RLS who have not responded to other treatments.
The question that some of us have asked is whether this device is truly an order of magnitude more effective than existing far cheaper devices which stimulate the peroneal nerve using vibration or percussion, such as Therapulse (£42.90 for one, £72.85 for two). Some find this works well for them, others not.
My doctor (US) looked into it just last week. Slow rollout. We also discussed how it would help my upper body symptoms. Haven't found any research on that. Yes. Will be cost prohibitive for most people. I'd try it though. Sounds similar to how a tens machine would stimuate the pereoneal nerve, just more convenient.
I have asked one of the patients if that’s the same, but he says it works and feels different. Tens didn’t help him, but Nidra did.
That's good to hear. I've been in touch with Noctrix Health, via the "Patient Concierge", Lisa Armstrong, (support@noctrixhealth.com). For now, insurance coverage is still a moving target, but I was encouraged to start the process anyway. She sent me an application which has to be signed by your doctor and sent back to them. I don't intend to pay $7,500 , but I'm guessing that the more applications they receive, the more insurers will consider it. Then the rollout will speed up. They way it works is that if you are approved and willing to pay, you'll be contacted by a local specialist. That's one reason why this will take time--people have to be trained in how to use it. I think she said the device has 4 levels of nerve stimulation. Anyway, drop her an email. She'll call you (in the US) and explain more. You're not obligated.
I’m in California, one of the states they are including in the early roll-out. They don’t have a list of specialists - I am meeting my GP tomorrow to discuss it. I guess it’s a matter of the doctor contacting Noctrix or vice versa. I’ll know more soon hopefully. I believe Medicare covers it, and I don’t think I’d try it without insurance coverage. But that is apparently the first step after getting a doctor to sign the Rx - and Noctrix will initiate the process.
I’ll keep everyone posted.
I was reading how they justified the price to insurance companies as not being much more expensive than paying for monthly medications. I can see that to some extent. Although, I have a feeling in some cases it will be an add on to medication. I'm not sure I'm up for going through the hell of weaning off my opiod to then have to try it. I'd need my insurance to pay for both. Then see if I'm able to reduce my medication without issues. Also. I'm assuming it would help with PLMD as well as I sleep. If not then I need my medicine anyways. Hope to hear positive reviews.
I was told by the manufacturer that it wouldn't help PLMD. They didn't say whether that was because it hadn't been tested, or had been tested and found to be ineffective. I didn't follow it up as I'm in Australia and there are no plans to distribute the device here.
My plan if I get it would be to start using it as directed, then start tapering down my buprenorphine slowly to see if I can get by without it or with a reduced dose. It sounds to me like it is focused mainly on PLMD - hence the directions to use it before bed for 30 minutes. From my limited experience in contacting them so far, the people they have handling the sign-ups and correspondenece are not very knowledgeable - just sales people.
This fits with my conclusion that most RLS comes from the brain, because it appears that the device "overrides" the signals from the brain. So ok, why do the signals come from the brain? because something is crossing the blood-brain barrier that shouldn't be. So why is something crossing the blood-brain barrier and what could that be? If your microbiome has been destroyed by "whatever" (usually antibiotics, especially fluoroquinolones, but also chemicals in your food) then you will have leaky gut and stuff gets through that shouldn't, is in the bloodstream, the BBB is also messed up for the same reason (posions) and -- here you are. We have to avoid triggers because of the leaky gut, the triggers are substances that cross the leaky BBB, and bingo you have RLS because the brain is over-stimulated by substances that should not be there in the first place.
Yes I know I am a broken record and will eventually get tired of saying this over and over.
I did the clinical trial and found the relief using the unit not that great to warrant paying that price. The trial units were only good for 2 half hour sessions and maybe another 10-15 minute treatment. It just wasn’t enough to control the symptoms. I was told at the time they could not increase the battery time. In my opinion, not enough relief for me to pay that price.
Info needed re US please
Findings of the 2016 Article in MedCrave on 2 June 2016 in relation to the Use of Potassium Citrate in RLS?
