Trouble transitioning to Gabapentin - Restless Legs Syn...

Restless Legs Syndrome

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Trouble transitioning to Gabapentin

Scottmiles profile image
5 Replies

Due to augmentation, I switched from Ropinirole to Gabapentin about 6 weeks ago. I did it in about a month (a bit too quick, I realize now, and suffered because of it), so I've been off Ropinirole for over two weeks. Unfortunately, Gabapentin has yet to do anything for me. I'm up to 900 miligrams a day and I still don't feel a thing. I've never struggled with my RLM like I have been the last two weeks. I've been averaging about 4 hours of sleep a night for the last six weeks and my RLM acts up most of the day.

My question is about the transitioning process and what I should do now. With Ropinirole, I just took it before I went to sleep and just dealt with the restlessness during the day. I have yet to feel anything from Gabapentin. I'll keep increasing the dose, but I'm wondering if Gabapentin just doesn't work for some people and I'm just wasting my time. I'm having a very hard time functioning. I can't take much more of this.

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Scottmiles
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SueJohnson profile image
SueJohnson

You are expecting results too quickly. It takes at least 3 weeks for gabapentin to be fully effective and it also won't be fully effective until you are off ropinirole for several weeks or more. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. On the gabapentin after the 3 weeks increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin " If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of it and don't take calcium within 2 hours. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

SueJohnson profile image
SueJohnson

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

Madlegs1 profile image
Madlegs1

All as Sue has advised.

Depending on how long you were on Ropinerol, and at what dose and the rapidity of your taper down, you will suffer prolonged withdrawal symptoms.

This could go on for months (DAWS).

Eat healthy, avoid ALL processed foods with artificial ingredients.

Keep a food diary to check for any triggers-- you may be shocked and surprised!!

Good luck.

Joolsg profile image
Joolsg

Withdrawal from Ropinirole will last a minimum of one month after your last dose. Gabapentin takes 3 to 4 weeks to become fully effective. 900mg is a low dose. You can increase the Gabapentin and take it in the evening in split 600mg doses 2 hours apart. Your GP will need to increase the dose.

If the RLS/PLMD doesn't settle on 1800mg after 3 weeks, you may need to switch to a low dose opioid.

Follow Sue's advice on raising iron.

Loopylegs profile image
Loopylegs

That sounds like I could have written it! I was the same with gabapentin when I first came off ropinerole, like u I tapered off quickly and found gabapentin no help whatsoever until the wonderful advice here, I thought changing my DA to pramipexole was all I needed and it was great until I augmented again after 5 years on it, I've been slowing decreasing my pramipexole while increasing my gabapentin and adding codeine which has been helping me sleep greatly, I'm now down to a quarter of a pramipexole tab which took a few days to settle my symptoms again, I increased my gabapentin last night and took an extra codeine tablet which gave me 6 hrs last night which no rls, I still have it in my arms & legs during the day, and as I reduce the DA the symptoms do get worse for a time, then it eases, this powers me on because I know once I get off the DA I'm hoping my symptoms go back to the way it used to be, which was nothing like it is now! Stick with the gabapentin, I completely dissed it at the start, but it does help. I followed Sue & Joolsg advice on increasing gabapentin & decreasing the DA and slowly but surely I am getting there! Good luck!

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