I saw a post about those of you not in the USA wondering about the Nidra TOMAC system. I literally am testing it currently through the 45 day trial window to see if it works.
After a week of trying it, I am officially giving up on it and will be sending it back.
I have heard, and believe, that it will help many. Yes, it is $7500, and my cost would be $4500 through our high deductible insurance plan. If it had worked, it would have been worth every penny.
I encourage anyone that can get it to try it. I do believe that if my case wasn't so severe, it could potentially provide relief. On my left leg, the more mild one, it did seem to reduce the symptoms. My right leg, no.
For me currently, Neupro 2mg/day is providing some relief, so I will be going back on it and crossing my fingers it still works somewhat.
Let me know if you have any questions.
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I am aware. My previous doc was convinced that as long as I didn't go above 2mg/day, I would be okay. For now, it is the ONLY way I can sleep. My doc quit seeing patients and went into research, so yes, I need to find another doc. Thank you for the video link, and I was hoping to move away from the Neupro, but the Nidra system was not the solution I had hoped for.
It's a great shame that too many medics continue to conflate 'the opioid crisis' with low dose opioids used to treat RLS.
'The Massachusetts General Hospital Opioid Study shows that low dose opioids used in RLS do not lead to an increase in dose over long periods of time. Opioids should not be withheld due to fear of tolerance or dependence as they can result in complete resolution of refractory RLS and improved quality of life.' quoted from RLS-UK.
Dr Spector is who I would recommend too. He is excellent and very knowledgeable, You may be able to get his book at your local library Navigating Life with Restless Leg Syndrome.
You can get the book on Amazon if not through the library. I see Dr. Spector and he is very upbeat about the Nidra device. I'm sorry to hear that your insurance doesn't cover it well and can appreciate your reluctance. But initial research is very hopeful that the device will continue to improve symptoms over time. It changes the way the brain interprets nerve signals from the legs. It's different than massage or vibrations.
If you do decide to start your withdrawal you can see Dr A. Thomas Perkins at Raleigh Neurology Associates Raleigh to prescribe the ropinirole. He may also prescribe a low dose opioid to help you through it. He is on the Restless Legs Foundation list of doctors who have been recommended by members or who have asked to be on the list. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable or by doctors who have applied to be on the list. They still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. The reason is that the person that submitted the name might have been happy with a dopamine agonist and without an opioid. But in your case since you need ropinirole to help you get off Neupro that is not a problem.
I also recommend you join the Restless Legs Foundation at rls.org . A membership is $40 and they have lots of information on their site including a number of publications you can download and a monthly magazine.
By seeing him you can also get the full iron panel I recommended to check your ferritin.
Since I thought you would be seeing Dr Spector sooner I didn't continue with my advice so here it is:
Gabapentin or pregabalin are now the first-line treatment for RLS. the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
You would have to join the Restless Legs Foundation for this but there is a RLS Support Group in Ashville Michael Small 518-624-3346. Most of them have monthly meetings and for many of them you can attend virtually. Call and see.
Thank you very much Sue. Dr. Perkins was my doc and put me on the 2 mg/day Neupro patch and a low dose opiod as a rescue medicine. He is no longer seeing patients.
I am thinking abou asking to see another Neurologist in Dr. Spector's office hoping they follow similar protocols.
You might want to call Dr Spector's office and ask them which doctors treat as he does as it is not a given that they do as they are all independent. If you don't get an answer then when you call one of the other doctors ask if they follow the protocol in his book or if they follow the Mayo Updated Algorithm protocol..
Dr Perkins office is shown as open if you google "Dr A. Thomas Perkins Raleigh NC" and he is still listed on rls.org.
Can you report that he prescribed the neupro patch to you by emailing info@rls.org so they will take him off their list. I am not allowed to do it because it has to come from a patient of his.
Nevermind - in looking at his office where they list the doctors he is not listed.
While you wait to see Dr Spector you can start coming off the neupro patch.
You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. Easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then to come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. This is the first thing a doctor should do. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
By the way it would really help us to give you advice if you would indicate on your profile your gender and any other health conditions you have.
See this table from the Mayo Algorithm on usual effective doses: Joolsg as an example has been on 0.4mg of buprenorphine for 4 years and has never increased the dose, and it covers ALL her RLS.
I've used the Nidra bands for 6 months. They do nothing for my severe RLS symptoms, but generally help with mild symptoms. I continue to use buprenorphine. Nidra is nice to have when I get mild breakthrough symptoms - usually enabling me to get back to sleep without needing more buprenorphine. But I'm not sure I'd pay $4500 for it..... My insurance covered all of it, so I wasn't faced with that decision. My underlying RLS symptoms are much worse after augmenting on pramipexole 18 months ago. That might be another reason for you to try to stop the Neupro before reaching augmentation.
Repeating this thread because it went sideways....
You can get the book on Amazon if not through the library. I see Dr. Spector and he is very upbeat about the Nidra device. I'm sorry to hear that your insurance doesn't cover it well and can appreciate your reluctance. But initial research is very hopeful that the device will continue to improve symptoms over time. It changes the way the brain interprets nerve signals from the legs. It's different than massage or vibrations.
He said most of his patients can't quit drugs altogether, or at least not initially. Research is ongoing and there is reason to hope. If you can afford to keep the device, see if you can get on with Dr. Spector and get his advice. He takes new patients but there's a long wait, like nine months.
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Restless Legs Syndrome 
Noctrix Nidra device approved 
Can I suggest a trial?
I have only one 'restless leg'
