Gabapentin - occasional use? - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin - occasional use?

passgo profile image
35 Replies

I was previously taking Gabapentin (900mg), but decided to stop due to the side-effects.

Last night, after a few really bad nights, I thought I'd just pop 600mg of Gabapentin to see if it could help. It did.

So, my question is:

Is it possible to take Gabapentin periodically? Are there any negatives to doing this?

Thanks

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passgo profile image
passgo
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35 Replies
Washmo profile image
Washmo

I take my gabapentin on and off depending on my side effects. Doesn’t seem to be a problem.

passgo profile image
passgo in reply toWashmo

Thanks, Washmo!

Wairahi profile image
Wairahi

I take 600 mg regularly and an extra 600 mg when I need it. So far no observable ill-effects.

passgo profile image
passgo in reply toWairahi

That's what I wanted to hear, Wairahi :)

Nevermind61 profile image
Nevermind61

I was taking 600mgs 3 times a day but my surgery advised cutting down so now I take 300 on a morning and 600 at teatime which is working.

passgo profile image
passgo in reply toNevermind61

Thanks for your reply. I'm keen not to take it on a daily basis. I did that before (900mg) but the side-effects were too much. I couldn't get my words out and my coordination suffered.

I'm glad it's working for you, though :)

Lowylynne profile image
Lowylynne in reply topassgo

Thanks for info on Gabapentin

bill54321 profile image
bill54321

Are you British. Pills? I am USA I take Gabapentin for a reason. 1) healing nerves2) Seizure I have RLS and take other Meds for RLS I use 2of 300mg with capsules. at night. I believe you need to talk to you Doc. Good Luck

passgo profile image
passgo in reply tobill54321

Thanks, Bill. I'm just gathering other people's experiences before I go to the doctor. I'll need to see him for a repeat prescription if occasional Gabapentin is a goer.

Midnight-Blue profile image
Midnight-Blue

Hi! I “see” you have some questions concerning Gabapentin. (Which, by the way, is the generic term for Neurontin.) I have been taking it for several years for my DDD (Degenerative Disc Disease), 300 mg x 3 /day.As in most medications like this , it’s “designed” to take “more than one”. Unlike an aspirin, which has a limited dose (Because usually that’s all that is needed.) you were prescribed Gabapentin for a more “chronic” condition. Clear as mud, huh? Lol Did it hurt you by Justin “popping “ it once? Probably not. Did it do any good? Only you can say however, you really need to talk to your physician about any side-effects you are/have had with it. Perhaps there is something else that can be prescribed for you. (Also, none of us are physicians on here. We just try to help by sharing our experiences. Always consult you doctor (Thry get paid their big bucks for it!)

passgo profile image
passgo in reply toMidnight-Blue

Yes, taking it did help, thanks (sleep-wise). But having read other people's comments, I think I'll reduce the dose down to the minimum just so it takes the edge off enough for me to sleep. Sadly, there's nothing else the doctor can give me. We've had long discussions on the topic and he only prescribed Gabapentin because I showed him some papers from PubMed that detailed how Gabapentin is used for RLS in the USA. It's not on the list where I live, you see. Thanks for your comment.

Midnight-Blue profile image
Midnight-Blue in reply topassgo

You’d think that as many mg I take of Gabapentin it would help with my RLS but it doesn’t even take the edge off! It’s 3:10am when most people are asleep 😴. I’m lucky if I can get 3-4hrs/night & that’s with interrupted sleep! (But, I sure get a lot done: I balanced my checkbook, figured out what my Grandson owed me, swept floors at least twice twice [After 00:30am ], finished reading a book & began another. All since Friday at 9:00pm!) While we’re on the subject, I take Ropinirole . Unsure if it can be had in England. 🤗

passgo profile image
passgo in reply toMidnight-Blue

Sorry to hear that, Midnight-Blue. That's a tough situation. Out of interest, is your mind active enough to get you out of bed and doing things? It sounds like it is. Typically, I'm too tired to read or do anything so I just lie there flipping around like a fish on the quay. Could it be that you are experiencing high glutamate in your brain. I read that there's an iron-dopamine-glutamate pathway (not the right word). Sometimes when my legs are firing, my mind is too. Now I avoid certain foods that ramp up glutamate such as aspartame, MSG, etc. Don't want anything interfering with that beautiful GABA that calms us down. I hope things improve for you.

PS: Ropinirole is available in the UK, yes. I tried it about 12 years ago and the side-effects were terrible so I stopped. I tried it again here in Germany last year and again, terrible. Gabapentin was my last pharmaceutical option. Now I'm looking at other options.

ChewieandAsha profile image
ChewieandAsha in reply topassgo

I an with midnight blue I have been up since 12.45am it is now 3.35am I too have done the weekly online grocery order we will see how it is when it gets here a bit fussy in the head but not too bad.

passgo profile image
passgo in reply toChewieandAsha

Sorry to hear that you were still up at that time!

Midnight-Blue profile image
Midnight-Blue in reply topassgo

It’s 2:27am here and PLAN to go to bed after “talking to you. Thankyou for replying and yes, I am totally alert & functioning (lol) ! I balance my checkbook, do the laundry - whatever it takes as long as I am on my feet & keep moving! I hate it! I have run out of options. (I just turned 70, I have MS which seems to have affected my legs and here I have RLS! Talk about a double whammy!) But, so many have problems worse than me (& I know this sounds wierd, more time than me; longer to have to put up with all this crap!) that I take each day as it comes. I’ve learned not to plan for tomorrow . But I sure wish they’d find a cure for RLS!

Irmajs profile image
Irmajs in reply toMidnight-Blue

How long have you been on Ropinirole? It could be why you can’t sleep. Most people eventually augment on it. Try looking up augmentation from dopamine meds. After 2 yrs on it augmented and had RLS 24/7. I couldn’t sit down for 5 min without restless legs day and night. When I went off of it my legs calmed down and went back to only at night. I now take CBD and it calms my legs without side effects. Sorry you are having such a rough time.

Guitarpickin profile image
Guitarpickin

My GP told me I can take gabapentin on an as needed basis. But the amount prescribed was lower than yours (300mg). I now only take 200 on an as needed basis-but I basically take it nightly these days.

passgo profile image
passgo in reply toGuitarpickin

Interesting. Perhaps I should just take the one tablet (300mg) rather than two (600mg). I'll try that. If I'm not taking it regularly (well, not every day), then perhaps that will work. Thanks!

Irmajs profile image
Irmajs in reply topassgo

I take it on an as need basis. I use CBD to calm my legs and gabapentin if I can’t get to sleep. I know what you mean about the side effects. IAt one time I took it regularly, but for it to calm my legs the dose was too high. 100-200 mg works fine with the CBD. Good luck.

Marilynn profile image
Marilynn

Thats strange. I've been on Pregabalin for around a year and over the last couple of weeks or so have been coming off it for just the same reason - side effects. However the consequences of coming off it are worse than the side effects and I've been wondering the same thing. Whether I could try taking it just when needed ( which would probably still be at least once a day (been taking 150mg twice daily. Been cutting it down to 75mg once a day gradually but suffering for it. The plan was to come off altogether but don't think that's going to work somehow.

passgo profile image
passgo in reply toMarilynn

Yes, coming off it is difficult. I was on 900mg per day (three 300mg tablets per day) and dropped one tablet each week until I was completely off it. Good luck!

Irmajs profile image
Irmajs in reply toMarilynn

Your doctor should give you something else to help you come off of it gradually. Don’t do it on your own. CBD can help until you get to the dr.

tealsea profile image
tealsea

900mg!! I take 50mg and have side effects.

passgo profile image
passgo in reply totealsea

Initially, I was on 600mg but I quickly got used to it and so I upped it to 900mg to counteract the restlessness. Then, the side-effects ramped up. A few weeks later, I realised that 900mg wasn't doing the job, so I made the decision to come off it completely. Raising the dose more would have for sure resulted in more intense side-effects so I called it a day....until I had the bright idea to find out if I could take a lower dose occasionally.

passgo profile image
passgo in reply totealsea

I think the per day starting dose here in Germany is 100mg and the highest dose the GP will allow is 1800mg. 50mg sounds very low, but great that it does the job for you (even if you do "feel like crap the next day").

tealsea profile image
tealsea

I take every once in a while. I know I'll feel like crap the next day, but it works at night.

passgo profile image
passgo in reply totealsea

Yep, I know what you mean. I took some last night and then took the dog out this morning. Dropped the umbrella, dropped the keys, almost fell in a bush, hit my hand on the door. My coordination goes to pot after these taking Gabapentin. I must've been an accident-prone zombie when I was on them full-time. No wonder my wife was concerned!

I'll try a lower dose. Perhaps that will be enough periodically. Thanks for your comment.

juweave profile image
juweave

I'm interested to read that people get relief from occasional gabapentin use and at low doses. From my experience, it seems to be a drug that builds up over time so you have to take it for at least two weeks before you know whether it works or not.

I was on 900mg at night and decided to reduce by 100mg a week as it wasn't giving me a good night's sleep and I didn't like the side-effects. I'd got down to 100mg when the RLS kicked in again big time and my sleeping got even worse. At least I'd found out that the gabapentin was having some positive effect, so I'm now increasing it again to 600mg. However, it's not helped yet and I'm thinking I'll need to give it 2 weeks before I know. Changing the dose by even 300mg a day doesn't seem to make any immediate difference. Is it just that we're all different?

passgo profile image
passgo in reply tojuweave

Yes, I also understood that it took time to build up in the system for it to work. So, I was surprised when I took it again (a couple of months after quitting) and it worked. It worked again last night. I may use it occasionally if the doctor agrees.

Typically, I will have a few bad nights in a row - with the severe over-tiredness exacerbating the RLS - and then look for something to reduce the restlessness enough to sleep (not refreshing sleep, but not awake) and to break the constant over-tiredness. For this, I often use Syndol (doxylamine, paracetamol, codeine), which shouldn't work as it has a first generation antihistamine in it, but the short-term sedative effect plus the codeine seems to work enough. I also sometimes take No-Spa (Drotaverine), which is an antispasmodic drug (that my wife takes when she has her period).

So, in answer to your question: Yes, it does seem that we are all different. I hope you get some quality sleep soon.

juweave profile image
juweave in reply topassgo

Did you find it easy to come off gabapentin? Once I'd got down to 200mg or so my RLS kicked in horribly and I started having difficult symptoms during the day, so I'm increasing again so I can go away on holiday. I may try to reduce again at another time when I've got less on if I think the horrible withdrawal will end eventually.

passgo profile image
passgo in reply tojuweave

In terms of withdrawal symptoms, I was fine. But the RLS flooded back in with each drop in dose until I was back to my normal restless level at the end of the process.

juweave profile image
juweave in reply topassgo

Thank you for your reply. I'll give it another sometime and see if I can withstand the increasing RLS and other symptoms.

passgo profile image
passgo in reply tojuweave

Perhaps discuss it with your doctor so they can help you manage the process and give you more information about what to expect.

Interesting to read your post and some of the responses you've had.

I'm so sorry you have had issues with side effects of gabapentin, Unfortunately, some people have intolerable side effects and others don't.

With such drugs it's always a matter of balancing the benefit of the drug against the side effects.

If ways can be found of increasing benefit and reducing side effects, this would help.

Benefit is best when a "therapeutic" level of the drug is achieved in the blood. If you don't take enough of it to achieve a therapeutic level then it won't be very effective.

Not only that, but once it's fully absorbed, the level of it falls off. This is measured in terms of it's "half life", i.e. the length of time it takes for half of it to disappear.

Hence you have to take more than necessary to achieve a minimun therapeutic level, because if you don't, the level quickly falls below therapeutic. i.e. it doesn't work for long.

As regards side effects, basically the more of a drug you take, the more side effects you'll experience.

Hence it's a matter of finding a dose that's high enough to be effective for a sufficient length of time, without it being so high it causes intolerable side effects.

There is another factor. This is "dependency". On the one hand this means that after taking a drug for a while your body adapts to it and side effects can diminish.

On the other hand it means once your body has adapted, if you stop taking the drug then you get withdrawal effects.

Another balancing act, if you don't take it long enough you don't adapt to it. If you take it long enough to adapt you're more likely to get withdrawals.

I can't say what the answer is for you, but it's a bit of a juggling act and I hope you work it out.

I do suggest you consider switching to pregabalin. It is more easily absorbed than gabapentin and is consistently absorbed at all doses. This is not the case with gabapentin. Hence pregabalin is more effective at lower doses and so side effects could be less.

50mg of pregabalin is equivalent to 300mg gabapentin. At those doses 90% of the pregabalin will be absorbed, only 80% of gabapentin. At high doses gabapentin sbsorption can be as little as 20%, pregabalin remains 90%..

The half life of pregabalin is more predictable 6 hours. Gabapentin varies 5 - 7 hours.

It's only a personal view but taking pregabalin every day may have some advantages, but I'm not certain.

One is when you take a dose, there will still be some in your blood from the previous day, so you may not need quite as much. You are more likely to adapt so side effects might not be as bad.

If you don't take it every day, then you're more likely to experience withdrawals, which can start within 24 hours.

I hope this helps.

Please be aware that there also non drug renedies for RLSthat might help and that it's accepted that refractory RLS may need a low dose potent opioid.

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