← Return to Restless Legs - Any suggestions as seen many doctors and medications

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@beetle1 Hi beetle1 ----I did 6 months of gabapentin and 3 or 4 months of pregabalin. Neither was effective. I also take buprenorphine now and this has been very effective. I got Nidra in April 2025 and the combination of buprenorphine and Nidra has been amazing for me. In the last 16 days I have only had RLS symptoms one night and the Nidra stopped these within couple minutes and I was back to sleep. For some reason, the Nidra is known to diminish the frequency people get RLS. Maybe retrains the brain ??? I was skeptical but that has been my experience. This took a while for me. Also, a few weeks ago my sleep neurologist suggested I take the subloxone closer to the time I go to sleep. That seemed to aline all my stars and planets. This is my longest time (number of days) without RLS symptoms. A year ago, I would not have thought possible. Maybe your doctor should read the Restless Leg Syndrome guidelines and prescribe buprenorphine for you. Also, the Noctrix Company (that makes the Nidra) has a list of doctors who you can see for prescription if your MD doesn't seem to do it in an acceptable way. When mine was prescribed I was warned (by Noctrix) if the patient history wasn't adequate insurance (in my case Medicare) would deny. Also, unfortunately I believe Nidra is not yet available in all 50 states (because they need to establish a support team in each state first---I had to have mine send to a friend's address in Ohio and went there for "activation.") In any case, advocate for yourself. The majority of doctors continue to treat ineffectively or prescribe dopamine agonists (which cause augmentation). Show your doctor the RLS guidelines. Pramipexole is a dopamine agonist. Personally, I will never take that class of drugs--they work until they don't and then they make RLS symptoms worse. Best of luck to you! I wouldn't wish RLS on anyone. Nothing has been more painful in my life than sleep deprivation.

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Replies to "@beetle1 Hi beetle1 ----I did 6 months of gabapentin and 3 or 4 months of pregabalin...."

@missjb
Thanks for the reply and also @vikkitennis. I don't see my neurologist until April, but I will be sure to ask her about the buprenorphine that both of you have had some success with. I'm a little bit patient at the moment because with the lower dose pregabalin along with iron and magnesium things are much improved. No longer have the uncontrolled knee jerk in the evening or in bed, but I do have toe tapping like nervous energy, and at night I have some RLS symptoms that I can fight through without needing to get up and walk.

When we applied for the Nidra I was told by the neurologist that I would have no problem getting it approved since I have a long history of ineffective medication help. Took so long for the first insurance rejection and have not heard anything on the response that I think the neurolgist sends to Noctrix and they send to insurance??? Not sure. I guess I'll find out in April

I do have tingling in the middle of the night that I associate with the RLS. Sometimes mild but sometimes it feels like my foot is ready to explode. Getting up or tangling me feet lower off the bed does alleviate it. Does anyone else with RLS have similar tingling? Just wondering whether it is part of the RLS or whether there is some other neurological condition or some arterial problem such as Peripheral Artery Disease (PAD). So many things.

I am 79 and taking a trip soon to costa rica with my wife and granddaughter. I take along some Norco as it is the only thing for me that stops RLS completely for me (while still on the pregabalin). Being confined to tight airline seats, different sleep settings, alcoholic drinks will make it worse and this helps and I don't feel a little opioid temporarily is a bad thing.