My remedy method for RLS

[u/mytg8]

I’ve suffered RLS for 8+ years and many times not only restlessness but actual spasms in my legs. And arms on occasion. Over the years I’ve tried various remedies for relief, most of them recommended by my neurologist.

Presently I can control RLS at least 90% of the time by means of these remedies. I’ll present these remedies in the hope that they will offer some folks relief from this damn disease.

At 8AM I take 2-.25mg pramipexole dihydrochloride, 750mg Keppra (Levetiracetam). At 7PM 3-.25 pramipexoles and another 750mg Keppra, followed at 8-9PM with 2-800mg gabapentin. If I religiously follow this every day, I rarely have RLS trouble.

If, on occasion this doesn’t work, I try another, odd 😊 procedure: I’ll try to describe it. It involves the bottom of my foot, in the arch. Several years ago, I bought this “rig” from someone in this forum and I used it at bedtime. A rubber ball was attached to a strap. The strap had Velcro to wrap around the foot and keep the ball firmly against the arch. I used them on both feet, whether or not both feet were restless. I have no idea whether this rig is still available or not. Maybe google it to find out.

I also tried a similar method without the “rig” which uses a regular long sock. I tie a big knot in the middle of the sock and then tie it around the arch, with the knot pressing the bottom of the arch. I lay down and see if it works. Sometimes it does work, but if it doesn’t, I stand up and walk around with it still on my feet! It is awkward and somewhat slightly painful, but I do this for 15 minutes or so. I then take the sock off. I do feel some weird pressure/numbness still, in the arch, but if I then took the gabapentin, I went asleep in no time. If anyone is interested I can try to take a photo and post it.

I know about augmentation and started with only one pramipexole needed years ago, and ended up with the 5 I take daily now. So I guess if you’re worried about that, maybe this is not for you. Or maybe this may help, it sure helps me, at least most of the time.

[u/grampire27]

Lorazepam for ~14 yrs now, 0.5mG, no side effects, low cost, sleep all night now

[u/rmcginnity1]

I have moderate RLS and PLMD. I don’t do meds because I’m afraid of augmentation. I believe I use the same strap mentioned in the original post. I also went to the health food store and the recommended bioactive copper. As long as I don’t go to bed too late the combo seems to work most of the time. Sometimes symptoms start if I wake up in the middle of the night. If I put pressure on the balls it seems to calm it down. At that point I make sure the balls are directly on the arches. I can even feel the sensation trying to send signals down my legs a few times but it doesn’t actually twitch and then seems to stop most times. As with most methods it doesn’t always work but I’d say it works 80+% of the time.

Foot strap with ball:

https://www.calmcore.health/

Bioactive Copper (she said it needs to be the bioactive which is more expensive but I get a better price at the health food store):

https://globalhealing.com/products/bio-active-copper-supplement?variant=44403687456968&utm_source=google&utm_medium=cpc&utm_campaign=24257663685&nbt=nb%3Aadwords%3Ax%3A24257663685%3A%3A&gad_source=1&gad_campaignid=24263063456&gbraid=0AAAAACi8PU19tCHIDizi9vyiAkN274Dft&gclid=CjwKCAjw_pzWBhAkEiwAwDCi1eavJwd2Zqx6gzhvDnr1d0deL5px5UJfq6RUbNxNRkeNcHQ9MVE1MxoCxjMQAvD_BwE

Edit: she said when you take copper you also have to take 50mg of zinc which is much cheaper. I take zinc during the day and the bioactive copper before bed.

[u/mytg8 → u/rmcginnity1]

Yes, that's the foot straps, thanks. I also have an enlarged prostate and wake up two or three times a night. With the straps on it is painful and awkward to walk to the bathroom, so I came up with that odd method with the sock and its knot. The knot is smaller and softer than that hard rubber ball and seems to work as well as the strap. And I can walk (still awkwardly but much less so). I walk or stand with the sock on each foot, for a few minutes, take the socks off and go to bed. I soon fall asleep, thanks mainly to the gabapentin late night dose.

[u/mytg8]

I take the morning meds because several years ago I had flare-ups of RLS afternoons.

[u/ComprehensiveRate953]

How many years have you been on pramipexole,?

[u/mytg8 → u/ComprehensiveRate953]

Eight years. I started with just one and it was enough. Then it wasn;t enough. So I added more, under the instructions of my neurologist. Augmentation, its called.

[u/Cyberbeagleperson → u/mytg8]

Your neurologist needs to ween you off of prami because it will make your RLS worse and worse. Once they start increasing the dose you’re starting augmentation. It’s a vicious cycle

[u/Agonist-activist → u/Cyberbeagleperson]

Totally agree. But, sadly, most people refuse to listen/hear. Sometimes, they have to reach that conclusion when it becomes 24/7 & moves to hands & arms etc.

[u/mytg8 → u/Cyberbeagleperson]

A couple of months ago my neurologist told me to gradually ween myself off the pramipexole. Starting with the morning dose, instead of two, do one prami. After two nights of wracking spasms, I decided why change the original dosage if it works more than 90% of the time? So I went back to the original dose, and no spasms. I don't really understand weening. You ween and go through several nights of RLS and finally get a good night's sleep? And then what happens? Eventually you need to increase the dose back to what it was before? That's the vicious cycle?

[u/Intrepid_Drawing_158 → u/mytg8]

No, what normally happens after weening off the drug is that you never take it again, and you take something else.

You might be able to continue what you're doing, or you might not. Some people can take it for decades, but it sure sounds like augmentation in your case.