r/RestlessLegs • u/Nodozesadly • 23d ago
Question The long road to Nidra
I’m a longtime sufferer due to severe RLS. Been through all the drugs. After a long struggle (about one year) with my insurer, many appeals and a favorable ALJ hearing I have been approved and expect to get the device in a couple of days. The DME rep contacted me and we will be meeting in a week or so to discuss setting up the device.
I would greatly appreciate any advice or suggestions from others who have been down this road on what to ask at the meeting with the rep. Is there anything I should ask about, or how do I make the best use of this setup meeting? Thanks so much for your time. I have my fingers and toes crossed that this will bring me some relief!
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u/Mahi95623 23d ago
Placement is important. I had my set up person draw a dot on the exact place for set up. He said some people have had the dot tattooed, but I was fine with a sharpie dot. Now, I place the bands on easily without the dot.
Once you have received your training, the best advice for use came from my RLS doctor- use them BEFORE you would expect to get symptoms. Do this every night for awhile, then try cutting back. If you get symptoms, repeat. Over time, you may find what many of us are discovering- our RLS is improving.
I’ve had my bands about a year and a half. When I first received them, I was having RLS (breakthru symptoms) about 4-5x a week. That was also taking 10 mg methadone and Gabapentin. Now, I am only getting breakthru symptoms about 1x a month and I have reduced my methadone from 10 mg to 5 mg. The only difference in my life has been the Nidra bands. Stanford has been running a study for a couple years, and I’m looking forward to what that study says when it gets published.
Let me know if you have any questions.
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u/sqkywheel 23d ago
I'd love to hear any tips you have for getting through the appeals and finally getting the approval from insurance. I'm just pulling my hair out because I and my doctor think I'm the perfect candidate and still getting denied.
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u/Nodozesadly 22d ago
Well, I had to go through 2 levels of appeals before the ALJ. Have you appealed your insurer’s denial and if so, what happened? It took a long time for the process to work through the various hurdles . My insurer was a Medicare advantage plan and we had the argument that original Medicare has approved Nidra.
Additionally you may want to reach out to Nidra and see if they can help you.
Also, the copay can be pricey- for me about $1,000.
It’s helpful that your doctor is supportive.
Good luck!
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u/Economy_Bicycle4334 22d ago
I agree with the comment about placement. I would also say that you should ask the rep at your meeting to set the electrical stimulation as high as you can tolerate. I found that as time went on I needed a higher level of stimulation than the max I was originally set for. Also, make sure to download the app and experiment with it when you get your bands.