After 20+ years of taking Pramipexole for RLS, I have successfully weaned myself off this terrible drug. I was taking 1.5mg x2 a day and against all advice, quit cold turkey about 3 weeks ago. Wow! What a difference it has made. I still have RLS symptoms at night, but not near as severe and my daytime drowsiness has improved immensely.
I recently came across some info on the NTX100 System which received FDA approval in treatment of RLS last year.
Has anyone tried this device and can offer an opinion on it? How much does it cost and does it require a Physician's prescription?
Thanks.
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For comments about the Noctrix Nidra see lower down my Reply.
Firstly, you came off 3 mg of pramipexole cold turkey???You'll have gathered that most RLS experts recommend a slow withdrawal supported by a replacement medication. Only Dr Earley from that group of experts backs a 3 week withdrawal, with a two week 'washout' after the withdrawal to assess baseline RLS . I'll leave others with experience of the process and meds to comment further and to discuss possible next steps.
The Noctrix Nidra TOMAC system works by electrical stimulation of the peroneal nerve and has been well reviewed. However it is currently only available in a handful of US states, needs a prescription, costs $7500, and may or may not be covered by your medical insurance.
There have been quite a lot of posts and replies about this, like this example:
Yes, cold turkey, and yes, I am aware of the recommended slow withdrawal and was advised I might need opioids to handle the symptoms. Nonetheless, I tried it and succeeded. Sure, it was rough the first week, and there was a couple of moments I almost caved in. But after surviving on 2-4 hours of sleep for over 10 years, my life was already hell. On about the 6th day, I finally slept for almost 11 hours and woke up feeling better than I had in years. My RLS symptoms still remain, but they are very mild in comparison to what I was experiencing and able to sleep through most of it. I now average about 6-7 hours sleep at night and tend to wake up every couple of hours, however the difference in the way I feel is nothing less than remarkable.
Now, that I've rid my body of this terrible drug, the last thing I want to do is introduce another toxin. I want to first explore home remedies or devices similar to the NTX100. I know there is no cure for RLS and it's possible my symptoms may worsen again over time. But until then, I'm going to manage the best I can without medication.
This is the Therapulse that Sue mentions and is mentioned in some of the replies to the Noctrix posts - it uses vibrations rather than electrical impulses. Some find it helpful:
Great to hear you managed to get off pramipexole so quickly. I complete agree about taking further drugs. I wake several times a night and probably spend 1-2 hours awake doing stuff and walking around but I’ve come to accept it and am still working through ways to manage it better through exercise, food, iron supplements and any other useful tips which come up here. Personally I came off pregabalin and realised I valued my clarity of mind more. I have to accept that one day the RLS may get worse and I’ll need medication but for now I’ll manage without.
I agree 100% ....... never want to go through "withdrawal" from any chemical ever again!! I am also going the natural way and yes have the "crawlies" at night but a cuppa coffee a little walk and back to bed. NO afternoon or evening RL. This is working for me. Unfortunately, it's trial and error to find what works for each person. Best healing wishes to all,
I've been communicating with Lisa Armstrong, the Patient Concierge at Noctrix Health. (support@noctrixhealth.com). I don't have a list of states but it's available here and we weren't included in the clinical research. She gave me a list of doctors in the area that are familiar with it. My appointment isn't until February though.
Someone on this site got the device and she said Medicare covered it. Coverage may change in 2025 anyway, so it will be awhile before I know anything more.
Pramipexole is used to dampen down the symtoms of RLS, it does nothing to address the causes of RLS. Similarly the NTX100 system is amechanical product intended to distract from the symptoms of RLS witout addressing the cause. The cause is in most cases neuroinflammation brought about by things in the diet, mostly carbohydrates and oxidative things like refined seed oils.
There is evidence that the NTX100 system can rewire the nerves that are sending errant signals. As they say, "More study is needed" but all patients that stayed with it over a two-year period experienced sustained improvement even after quitting the device.
Where does that information come from? I'll go with iron deficiency which has been proven as well as certain medications that aggravate the condition. RLS Foundation, Mayo Clinic, Cleveland Clinic and webinars by Dr's Winkelmann and Berkosky have been my sources of the most current information.
You are so brave to have gone off the prampexidole. It took me 9 months to wean off 12mg of ropinirole with the help of methadone. I'm also curious about the device.
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