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Restless Legs - Any suggestions as seen many doctors and medications
Sleep Health | Last Active: 4 hours ago | Replies (111)Comment receiving replies
I've had RLS for well over 30 years. Had been taking gabapentin 300 mg, then upped it to 600 and eventually to 1200. Then my doc said to also take pramipexole. Not crazy about more meds but had no choice. Started with 1 pill (forget the dosage) then went to 2 then 3 then 4. So 4 gabapentin and 4 pramipexole, and still had symptoms but at least somewhat controllable. Then I started seeing a sleep neurologist who told me about augmentation. That was why I had to keep going up in dosage and that eventually it would make it worse. So I reduced and eliminated the pramipexole, which was hard to do because of the addiction and withdrawal. After getting off but still on gaba, it was no worse than the 4 pramipexole I was taking with the gaba. But still had those creepy crawling things and need to get up and walk at night. So she suggested pregabalin instead of gaba, and using a substitution formula ended up taking 300 mg of pregabalin. and in addition taking same Vitron-C iron supplement to get my iron above 75 which it did. Stayed on this for 6 months but still not happy with the results. I felt confused in the morning from all this medication and worried about my eyesight so I decided to go cold turkey and get off everything except the iron supplement. A month of bad withdrawal, nausea, sleeplessness, diarrhea etc. But I did get off and then started back up slowly as the RLS was still bad. But got to a point where 75-100 pregabalin was effective enough with nighttime walks. Then I also heard about Magnesium helping and am now taking that and my RLS is now manageable with only occasional need for night walks. Nothing in the evening and able to sleep with only manageable disruption (don't know why but when I get the start of some symptoms I can sleep on my stomach with legs hanging over end of the bed which relives it after a while and can get back to sleep).
My neurologist put in for the Nidra device 6 months ago but insurance initially declined and they resubmitted. Have no heard anything since. Would this be effective enough to get off the pregabalin?
So in summary, 100 mg pregabalin, with iron supplement and magnesium is pretty good and hoping to try the nidra device
Replies to "I've had RLS for well over 30 years. Had been taking gabapentin 300 mg, then upped..."
@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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@beetle1 I am very sorry to hear of your experience with RLS and for a very long time. I too have experienced a form of RLS called Periodic Limb Movement Disorder (PLMD) for over 35 years. I too have tried everything put out there, saw 3-4 neurologists who would prescribe Neurpo Patch, then pramipexole (the worst, especially when augmentation occurs and you gonna Drug Holiday!)
I am seeing a sleep specialist at Mayo in Phoenix currently, and after listening to the many episodes of the leg jerks and living on 2-3 hours of sleep, she prescribed a tablet, an opiate called buprenorphine. I take .66 per night, and what a difference. At first, I was very resistant to it, as I never have done drugs, but she assured me this is what I would need to achieve the sleep I was deprived of. I have been on it for almost two years, and had a sleep study recently, which recorded many leg jerks per hour without my knowledge. I am set to have a daytime sleep study to see if it occurs lying down for two hours, reading or watching tv. Interesting. There is hope out there. I have heard about the Nidra bands, and I wish you well.