Gabapentin: Does anyone have any... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin

nutville profile image
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Does anyone have any experience with Gabapentin? My neurologist has given me a first dose of 300 mg 3X daily, also to slowly build off the pramipexol that I have been taking for years in higher doses, without any effect anymore due to augmentation. I must admit it seems to ease the RLS a little bit, enough for me to fall asleep.

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nutville
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Midnight-Blue profile image
Midnight-Blue

I take G. as part of my pain management (For Degenerative Disk Disease, which seems to be a popular disease as of late.) I take 600mg x 3. daily & if’s supposed to help with RLS you couldn’t tell by me! It’s almost 0400 hrs & I’ve taken my usual dose and of Ropinrole 4 hrs ago & I think I’m making a path walking from the kitchen to the living room & back!

in reply to Midnight-Blue

Unfortunately gabapentin doesn't work for everyone.

However, it's possibly the ropinirole that's the problem.

What dose are you taking and is this still several times a day?

If your RLS is occurring during the day as well as evening and/or spread from your legs to other parts of the body then you may have augmentation.

My experience of gabapentin when I started taking it was it didn't help my RLS at all. However, I had augmentation at the time. When I reduced and stopped taking the dopamine agonist the augmentation disappeared and the gabapentin started to work.

Even if you're not suffering augmentation then it's clear that the ropinirole is no longer working. Loss of efficacy is another very common complication of taking a dopamine agonist like ropinirole.

I'm sorry therefore that the gabapentin doesn't seem to be working for your RLS, but neither is the ropinirole. You perhaps need to discuss alternatives with a doctor.

Wow! It's great that your Dr has recognised you have augmentation due to the pramipexole. Also good that they are treating it by reducing the pramipexole and replacing it with gabapentin.

Unfortunately, if what you write is correct then their prescription of gabapentin doesn't seem right and may be actually unsafe. I'm hoping, in fact you have made a mistake.

A starting dose of 3 X 300mg is much too high. The starting dose of gabapentin recommended by the National Institute for Health and Care Excellence (NICE) is 300mg a day, and ONCE a day, at night.

That is for anybody under 65 years old. For anybody over 65 it's 100mg a day.

Hopefully the neurologist warned you of the side effects of the drug which include drowsiness, dizziness and balance problems and stumbling when walking.

These side effects can fade as you get used to the drug, but at first can be quite strong. It's best then, at first that you take it only at night because otherwise you will be at risk of falling and must be careful of driving, using machinery etc.

I hope the neurologist warned you of this.

To start on 300mg 3 X a day is dangerous!

Furthermore, it's also better to keep the dose of any drug you use to the minimum required to be effective. Gabapentin can have severe side effects and the higher the dose, the worse they are.

It's generally recognised that the effective dose of gabapentin can be as little as 900mg. If you don't need more, you shouldn't take more.

It would have been wiser then for you to start on 100mg or 300mg a day, (depending on age) and building up to no more than 900mg.

In addition, I hope the neurologist informed you that it can take up to 4 weeks for the gabapentin to start working. Furthermore, it may not work at all whilst you're suffering augmentation.

My experience is not uncommon. I was taking pramipexole and suffering augmentation. I was started on 300mg gabapentin (for nerve pain) and gradually built up to 900mg. Even after taking it 2 months, it was still making no difference whatsoever to my RLS.

It was only when I had reduced the pramipexole considerably that I noticed any benefit from the gabapentin.

You ought to be also aware that when that when you reduce the pramipexole you will suffer withdrawal effects and gabapentin may do little to counteract these.

In other words, it will be difficult to say for certain that the gabapentin's working for you until about 2 weeks after finally stopping pramipexole.

A further point about gabapentin for RLS is that since RLS mainly occurs at night, it's best to take ALL the daily gabapentin in the evening, not in 3 split doses. I appreciate with augmentation you may be getting symptoms during the day, but as you reduce pramipexole, daytime symptoms should fade.

This is what happened with me. So I gradually reduced the daytime gabapentin doses and increased the evening dose. For over a year now I have been taking 600mg, once, at night and it works.

I'm not claiming that only 600mg will work for you, you may need more, but as I say, you won't really know until you've stopped taking pramipexole.

The other worrying thing about what you write is I wonder what advice you've been given about reducing the pramipexole. It's not uncommon for doctors to underestimate how severe withdrawal effects can be and often advise a withdrawal schedule that is much too fast.

It depends on what dose you're currently taking, but if the neurologist suggested you can safely withdraw from pramipexole in a few weeks, they are mistaken.

The slower and longer the pramipexole is reduced, the less the withdrawal effects will be. In my case, I did it over 10 months at the rate of half a 0.125mg (0.088mg) tab every 4 weeks.

Forgive me for writing so much, I don't wish to question the medical knowledge of the neurologist, but I have personal experience of being in your situation and it's quite clear according to NICE and the British National Formulary, that a starting dose of 900mg a day of gabapentin is at least 3 X too much. If you're over 65 then 9 X too much.

This doesn't appear to be safe, otherwise I wouldn't have responded.

I would suggest overall, if you feel safe and well continuing to take 900mg a day then do so. If not discuss it with your GP. I wouldn't advise increasing it above 900mg a day for now, not until you've stoppef pramipexole.

Daewood1949 profile image
Daewood1949 in reply to

What a lovely thing to do, Manerva, to give us all that information. It must've been time-consuming and you put so much thought into your post. I love your intelligent , caring views on topics and meds. I was also given gabapentin and did not know this.

nutville profile image
nutville in reply to

Thank you Manerva for your post! I have been browsing the web for further information about the right dose of gabapentin to treat RLS and indeed, 3X 300mg daily seems quite high to begin with, although there does not seem to be much consensus within the medical world. I do not suffer that much side effects, except for some drowsiness but taken your warning into account I have now decreased the dose to 2X 300 a day, beginning half way the day. Weird thing is: it seems to work! My nights are already a bit less restless. I am also very slowly reducing my pramipexol dose by taking off one quarter a tablet weekly, so I am taking my time. Again: thx for the advise! Greets from Amsterdam.

Squeakychalk profile image
Squeakychalk

My dog was given gabapentin when she had almost continuous leg cramps, it has helped her enormously,

gaula75 profile image
gaula75

The only problem I have with Gabapentin is that it does affect my balance.

in reply to gaula75

It is an unfortunate side effect. I also find it gives me blurred vision.

Getting the correct prescription for glasses has been a bit of a nightmare. Last time I had to have 3 eye tests and 3 different sets of lenses before it was anywhere near right.

They ask what medication you take, but pay it no attention!

It's still worth putting up with this rather than suffering twitching and insomnia.

Lfoba profile image
Lfoba

I take that too plus 10mg of Methadone and it works like nothing else ever has.

B534967 profile image
B534967

Hi There, My doctor has prescribed Gabapentin 300 mg three times daily for another issue, and believe me in my case it does nothing, absolutely nothing to abate my RLS. I take Ropinrole .25 x 6 an hour before bed and it does help. Interestingly when I first take the Ropinerole my RLS symptoms are actually worse for the first 20 minutes or so immediately upon taking. Perhaps an allergic reaction - but it helps later so I am afraid to try something else. I guess my thought is better the devil you know than the one you don't. The RLS is awful, without the Ropinerole I cannot fall asleep without really tossing and turning for more than 2 hours then awake after about 4 hours total intermittent sleep for the night. Not only affecting me but my spouse as well.

Jody

Abookwriter2 profile image
Abookwriter2

I remember the first time I took gabapentin. I woke up next morning having slept like a baby and with a smile on my face. I took .25 ropinole then and now take sometimes another half ropinole with two gabapentin when it gets bad and then no gabapentin if not needed.

I found the combination of the two gave me overeating bingeing like a throw-back to college so stopped gabapentin altogether until recently.

Manerva has been the best source of information too along with a few others' input so keep asking the right questions!

WendyBea profile image
WendyBea

My experience with the same dose you're on, as I came off Pramipexole, was that it may have helped somewhat, but that it put me to sleep for most of the day. Every time I sat down I drifted off. I voluntarily gave up driving for six months. I gave Gaba a good try, but gave up on it. That dose was recommended by my family doctor, but when I saw a specialist, he said it was way too much for RLS.( I have friends who are on much higher doses for pain management and cope very well with it. ) Eventually, I got off it, as I thought it was ineffective. Now, I'm back on Pramipexole, but at a much lower dose (3 x .25 mg split up afternoon and evening),and supplementing it with codeine. It's not perfect, but it's better for me. I've been told not to increase the Prami, or I risk augmentation again.

bill54321 profile image
bill54321

Hi. You are on capsules. These are for nerve repair and seizures. 600mg PILLS are for Restless leg syndrome. Another maker is for shingles. Question your Doc. The medication may work without you knowing it.

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