ropinerole and gabapentin: A small... - Restless Legs Syn...

Restless Legs Syndrome

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ropinerole and gabapentin

cesoni profile image
21 Replies

A small dosage of ropinerole (0.75) plus 600 gabapentin working great for me after using ropinerole dosage of 4mg for over 12 years.

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cesoni
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21 Replies
Joolsg profile image
Joolsg

I reduced Ropinirole down to 2mg from 4 mg and my RLS was great for several months. Then the augmentation flared up severely again.If the Augmentation breaks through again, you only have 6 weeks of further reducing to get off it completely.

At least you will be aware of the signs.

Joe2528 profile image
Joe2528 in reply to Joolsg

this stuff is all poison and eventually doesn't work. Take it from someone who has been dealing with severe RLS for over 30 years. I don't just feel it in my arms and legs but the sides of my head as well. I honestly think if the average person dealt with what I do they would probaly want to kill themselves. I've taken everything you guys have suggested and it's all poison. Eventually you build a tolerence or augmentation and your stuck with a horrible addiction.

I've tried to go without the medication and my quality of life is just to poor due to lack of sleep and pain. So, if I have to take something, I'm going to take a grinded up leaf vs man made chemicals that destroy your life. I know because I've tried it all. Gabapintin, Tramadol, prampexole, ropinole, lyrica, trazadone, vicodin, perocet, even suboxine. It all works until it doesn't than your left with a severe addiction.

The only thing that helps me and I'll guarntee it's better than all that other poison that doctors love to suggest. (Red vein kratom.) It kills the pain and allows me to sleep. Like anything if you take to much you will develop an addiction. I take 1 teaspoon at night as soon as the pain starts to be to much. The pain usually makes me tired but I'm in to much pain to sleep so this is why I wait to take it. It generally takes 5-10 minutes for the kratom to kick in than I can sleep. I've never had a doctor help me. The only thing I've ever gotten from a doctor is addiction. If you guys want to take matters into your own hands and don't want to rely on doctors who just want to give you poison instead of something natural try kratom. Just don't get crazy with it.

You guys really need to suggest this but I'm sure you won't because it's not FDA controlled.

Joolsg profile image
Joolsg in reply to Joe2528

We do suggest kratom to those going through brutal withdrawal BUT with the caveats that1. It's illegal in the UK; and

2. It does lead to tolerance and users end up on higher & higher doses.

I've been on 0.4mg Buprenorphine sub lingual pills for 3 years.

No RLS ever. NO tolerance. No addiction.

I'm sorry to hear subutex didn't help.

Joe2528 profile image
Joe2528 in reply to Joolsg

that's unfortunate it's illegal in in the Uk. You can buy it online here in the U.S. On the other hand they won't even consider perscribing Buprenorphine in the U.S.

Joolsg profile image
Joolsg in reply to Joe2528

That's not actually correct. Many top RLS experts prescribe Buprenorphine in the USA and Dr Berkowski did a trial recently.

Joe2528 profile image
Joe2528 in reply to Joolsg

I asked and they looked at me like I was crazy

Joolsg profile image
Joolsg in reply to Joe2528

You need to join rls.org and refer your doctors to rlscurbside.org/

If you let us know the state you live in and nearest city, we may be able to direct you to a knowledgeable doctor who follows the Mayo Clinic Algorithm.

Joe2528 profile image
Joe2528 in reply to Joolsg

I live in Florida

Joolsg profile image
Joolsg in reply to Joe2528

Jacksonville Sleep Centre. Dr Festic.jaxsleepcenter.com/

My Scottish friend married an American guy and she visits this Sleep Clinic and Dr Festic prescribed low dose buprenorphine pills. She is completely free of RLS now.

Also watch Dr Winkelman's speech on augmentation and getting opioids in the USA.

youtu.be/h5Hyhmxli54?si=b5Q...

Marzipana profile image
Marzipana

Hello Cesoni, I'm sorry for the late reply. Do you take the .75mg Ropinerole/600mg Gabapentin nightly?I never felt Gabapentin did much for me, and the Ropinerole, well, it worked until it it turned on me with a vengeance (augmentation). I take 50mg about once a week so that I can at least get one good night (about 6 hours) of sleep in the midst of nights when I'm up most of the night, walking, eating, cooking, cleaning drains, cleaning out the storage room in the basement, but not sleeping. I think I've started to have some augmentation, even with that small dose....lately I get wonky legs/feet in the evening while watching TV. That hasn't happened til now, after I completely got off of Ropinerole and Gabapentin about a year ago. (It took about 3 months to wean off of them.). Maybe I'm mistaken that it is augmentation going on, but I think/worry that it is. My Neurologist finally prescribed first Methadone, which was not available in this area, then low dose Zubsolv (who makes up these weird names??), which is Buprenorphine plus Naloxone (spelling?). Costco pharmacy says they have it, but I'm still waiting for .y doctor to be back in office and send a script to Costco. She's gone every 2 weeks. You'd think I was asking her to fly to the moon and battle dragons in order to get it for me!!! It's been 9 months that I've been sleepless, and am hoping I get the Buprenorphine and that it works!

Joolsg profile image
Joolsg in reply to Marzipana

50mg gabapentin won't help. The starting dose is 100mg, the average effective dose 1200-1500mg. Buprenorphine with naloxone is available in 2mg pills in USA. Start low, if you get it. Cut pill into ¼. I take 0.4mg here in the UK and it works 24/7.

Marzipana profile image
Marzipana in reply to Joolsg

I misspoke about Gabapentin. I haven't taken that in over a year. I take a 0.5mg tablet of Ropinerole 1×week, and get a decent night's sleep. I found this HealthUnlocked forum when I was googling how much I could safely take without augmentation occurring. The one night I took Zubsolv (last Friday, after I finally got a prescription and found a pharmacy that dispensed it) was a disaster! I was so sick Saturday morning, and finally I had my husband take me to ER in the evening after consulting HealthUnlocked. I got an IV with fluids and 2 antinausea drugs, and they sent me home with a prescription for antinausea drugs. Even today I was still a bit dizzy and had no appetite.

I don't have any prescription drugs that help me, so I'm up again all night. I really had my hopes up for the buprenorphine, but can't imagine going through that again!

Joolsg profile image
Joolsg in reply to Marzipana

I was extremely sick the morning after Buprenorphine. I was literally unable to move for a week. However, 0.4mg stopped all RLS, so I was determined to make it work.I lost 7 pounds as I couldn't eat for a week. I then remembered medical cannabis stops chemo nausea and I had some left over.

I took cannabis and the nausea disappeared.

If you ever decide to try Buprenorphine again, start low (0.2mg) and have cannabis ready.

It has changed my life.

I am totally RLS free while I take it.

The nausea subsides for most after a week.

SueJohnson profile image
SueJohnson in reply to Marzipana

My second laugh for the day " You'd think I was asking her to fly to the moon and battle dragons in order to get it for me!!!" 😀

Marzipana profile image
Marzipana in reply to SueJohnson

I have fantasies of pummeling my doctor with a bed pillow and yelling, "How would you like to NOT SLEEP for nights on end?!?"

SueJohnson profile image
SueJohnson in reply to Marzipana

My new laugh for the day😀

LotteM profile image
LotteM in reply to Marzipana

Marzipana, can you get another doctor to issue the prescription? If is has been 7 months (even if it is one month) since she said she would do it, it is obvious she won’t. Have you reminded her or her office? If not do. And meanwhile see if you can find someone else and wait no longer than a week to take more action. Not sleeping is bad for everyone.

The 0.5mg ropinerole once a week is unlikely to cause augmentation I think (but no-one did research on that), but the almost constant sleeplessness is brutal. I hope you’ll find a way out. Soon. Very soon. Buprenorphine has brought my sleep back too after some 5 years of very bad sleep. No dose increase over the 3.5 years I have been taking it.

SueJohnson profile image
SueJohnson in reply to LotteM

Once a week, even a couple times a week won't cause augmentation

Marzipana profile image
Marzipana in reply to LotteM

Did you deal with the extreme nausea? I'm terrified to try it again after the first go at it. Medical Marijuana is not available to me.

LotteM profile image
LotteM in reply to Marzipana

I didn’t and don’t experience any nausea on buprenorphine . Lucky me.

What dose did you try previously? Maybe it helps to start really low and build up very slowly, so your body can adjust.

Marzipana profile image
Marzipana in reply to LotteM

The one and only dose of Buprenorphine (Zubsolv) I took last Friday night was .7mg . I guess this is higher than some doses of the Health Unlocked folks, especially in the UK. A pharmacist told me that the reason I couldn't get methadone (which my doctor first prescribed), and had a heck of a time getting the Zubsolv was because the doses were unusually low!! That's amazing you never suffered from nausea! I always thought I had an "iron belly" and could eat anything w/o feeling sick, but Boy Howdy!, the Zubsolv had me feeling as if my gut was turning inside-out the evening I went to ER after vomiting all day. "Yawning in technicolor" (as we used to refer to vomiting back in high school : ) had never been that bad!!

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