Twitching leg in the evening - Restless Legs Syn...

Restless Legs Syndrome

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Twitching leg in the evening

Burrelle profile image
7 Replies

Last July, I switched from clonazepam to gabapentin for RLS. My doctor had started me at 600 mg but I would still wake up a couple of times a night. I was able to get her to increase the dosage to 900 mg . I know! Still a low dosage but because I have CMT, there is an issue of balance. Anyway, it seemed that I was doing pretty well on the 900 mg and even sleeping through the night on some nights. For the last few evenings, my leg has been twitching before I go to bed. And that hasn’t been a problem since I started taking medication for RLS about 9 years ago. Maybe something other than the RLS going on that could be causing the twitching? I’ve actually been pretty pleased with the gabapentin.

I have an appointment with a neurologist for the CMT in a couple of months. I am hoping he will be more willing to increase the gabapentin than my regular doctor. Especially since I believe I also have peripheral neuropathy

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Burrelle profile image
Burrelle
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7 Replies
SueJohnson profile image
SueJohnson

Are you taking your 900 mg in divided doses - 600 mg 1 to 2 hours before you go to bed and 300 mg 2 hours before that?

Burrelle profile image
Burrelle in reply to SueJohnson

I’ve been taking 600 mg 2 hours before bed and 300 mg at bedtime. Maybe I should try your suggestion. Thank you!

Budreaux profile image
Budreaux

Hello Burrelle,

I don't know anything about peripheral neuropothy or other potential causes for the twitching other than RLS, but I thought it might be useful to tell you about my experience with clonazepam.

I used clonazepam for years. It helped a bit, at first, though I can't say it ever controlled my RLS.

That changed when a doctor added Mirapex to the mix. The combination worked great.

There were times when I ran out of one or the other. If I had no clonazepam, I could still sleep. If I had no Mirapex, I could not sleep for a single minute all night long, and the next day I kept falling asleep but couldn't because the RLS was so bad.

I never liked that clonazepam is a controlled substance and addictive . So, once I figured out it wasn't making that big a difference in my RLS, I worked with my doctor to get off the Clonazepam.

I recently discovered that Mirapex is addictive, too. Over a very long timeframe, 10+ years, I found I was needing more of it to have the desired effect.

I started working with my doc a couple months ago to get off Mirapex and transition to Gabapentin. I went from 3 mg of Mirapex down to 1.5 mg fairly quickly. That's with 200 mg of Gabapentin. I'm going to stay where I am for a while because I want to get good sleep for at least a month before I try and reduce the Mirapex more.

I don't know if you've ever tried Mirapex, or if you would even want to, but I found it to be far more effective than clonazepam. If you're still struggling with the Gabapentin, I wonder if it would make any sense to try a very low dose of Mirapex for a transition.

Good luck! RLS sucks!

SueJohnson profile image
SueJohnson in reply to Budreaux

You were suffering from augmentation and you are wise to come off it and transition to gabapentin. You may know the following but in case you don't: To come off mirapex, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Dopamine agonists like mirapex and ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin. It won't be fully effective until you are off mirapex for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of it. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you haven't had your ferritin checked, ask your doctor 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 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Budreaux profile image
Budreaux in reply to SueJohnson

Thanks, Sue!

SueJohnson profile image
SueJohnson

Don't take Budreaux's advice. Mirapex is a dopamine agonist and up to 70% of people on it will suffer from augmentation.

Jetto profile image
Jetto

you should consider seeing a RLS specialist. Find in RLS.org listing.

Very few neurologists really know how to treat RLS.

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