Success Story (so far, anyway) - Restless Legs Syn...

Restless Legs Syndrome

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Success Story (so far, anyway)

buzzin247 profile image
7 Replies

I've had RLS for decades, starting in my 30s. Was on carb/levidopa for a while till it became no longer effective, then switched to Roprinirole, which worked just great, but had to keep upping the dosage to keep it's effectiveness.

At 4MG of Roprinirole, I was running out of options, did some research here, and realized I was undergoing some pretty bad augmentation and decided to quit it. Docs were a little useless but again research here helped a lot, and I slowly weaned off of it- took 6-8 months to fully get off the drug, and meanwhile tried the usual range of medications and alternative therapies- klonopin, gabapentin, pregabalin, iron tablets, iron infusions, acupuncture, deep massage, lots of supplements, etc. None of them did a damn thing. Cannabis helped a tiny bit.

I went almost two years sleeping maybe an hour to an hour and a half a night in 15 minute increments. It was horrible, you guys all know. I was a walking zombie and could only do what I needed to do to survive and not a bit more. It's a miracle I kept my job. My wife had do drive me places because it was too dangerous for me to drive.

Finally a RLS specialist in Boston suggested methadone in conjunction with pregabalin, and within a week I was sleeping like I never have before. RLS is essentially GONE. I was a pretty severe case, and so far anyway, I feel cured. (knock on wood). I can sleep for 8-10 hours a night. I feel 20 years younger.

So just wanted to drop a note to all the good folks here, thank you for the help and guidance while I lurked, and tell ongoing sufferers that there is hope out there, just keep looking for it.

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buzzin247
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7 Replies
SueJohnson profile image
SueJohnson

That's great ! So pleased for you.

Joolsg profile image
Joolsg

Fantastic news. Methadone and Buprenorphine work brilliantly on Refractory RLS.I just wish more doctors would learn about their effectiveness and prescribe them.

Like you, I'm sleeping 8 hours every night on 0.4mg Buprenorphine. It saved my life.

Marlayna67 profile image
Marlayna67

great news!

Simkin profile image
Simkin

How amazing you sleep so well. Wow!I have now found success at last with buprenorphine but I still wake up a lot. I know this is just habit after years of broken sleep with RLS.

However I don't care that I am up & down with broken sleep as it is just such bliss not to suffering from RLS.

GaryHB profile image
GaryHB

So happy for you!

DicCarlson profile image
DicCarlson

Amazing! Great transformation from the correct treatment!

That's great you've found something that works, and that you're feeling so well. I'm curious as to why your specialist suggested pregabalin in combination with methadone. I'm more familiar with people taking methadone on its own.

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