Hi im new here, I've been prescribed gabapentin 100mgs x3 daily after refusing the 'only drug' the doctor said was available ..namely ropinorole. I refused that as first line, as I'm aware of augmentation , and other side effects like impulsive behaviours. I am aware of NICE guidelines. I pointed out these to my doctor who said "well that's the only drug I can give you, as you are on lamictal for epilepsy, and the rest are painkillers" I had to ask for gabapentin to try, and was told if I read all side effects of drugs I'd never take anything! . Even paracetamol has side effects.
Anyway one week of gabapentin later I've decided to take 2 x 100mgs at night ...and I'm still waking up with the horrible sensations , shortly after going to sleep and approx 1 to two hours later... then again in a few hours. When I wake up I have to use battery massager or ice packs on legs, and sometimes both. Last night I was in a horrible half awake/half asleep state for hours, and I'm now dreading taking any more gabapentin.
I have had bloods done and doc says OK but I am aware that what they may class as ok may not be.
I feel on an island as far as doctor is concerned and considering changing or even seeing a specialist privately.
I felt taking meds at night best as I'm OK during day.. I just feel exhausted as rls worsening and so sleep deprived. I am not even able to work just now.
Any advice would be greatly appreciated.
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Lizzybuz27
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I'm sorry to hear you're having such problems with your GP, who if what you write is correct is quite disrespectful. That is, irrespective of whether they're right or wrong.
Decisions about treatment should be shared decisions made by doctor and patient in partnership. This is difficult if the doctor is both apparently ignorant about the treatment of RLS and ignorant how to behave towards people.
Having looked this up, there doesn't seem to be any negative interactions between Lamictal and Gabapentin and there's even some suggestion that this is a good combination.
Side effects can add together.
Please clarify, when you say you're still having the horrible sensations do you mean the RLS symptoms you had before taking the gabapentin? You don't mean they have got worse since starting the gabapentin?
If these are the same sensations as before and you were expecting the gabapentin to relieve them then there are 3 good reasons for this, which further demonstrate your Dr's ignorance.
1) RLS mainly occurs at night and hence gabapentin needs to be taken at night, when you most need it. If you split the dose into 3 times a day then it's notgoingto be as effective at night and the other 2/3 are really wasted.
2) You need to be taking a sufficient dose of gabepentin in order for it to even begin to work. A typical minimum effective dose is 900mg per day. 300mg is only a starting dose. The dose needs to be built up from that until it begins to work.
3) It may take up to 3 - 4 weeks for gabapentin to become effective. During that time side effects can be quite noticeable. These include drowsiness, dizziness and difficulty walking. They usually fade after a few weeks.
As a result of the above 3 things, quite oftenI see people trying gabapentin for a couple of weeks only experiencing side effects and no benefit and giving up on it. As you're thinking of doing.
Possibly becasue your Dr didn't tell you of these things.
I therefore suggest you keep trying gabapentin for at least 5 weeks. I also suggest you take the whole daily dose 2 hours before bed time.
For doses of 900mg or more you can split the dose in 2, 2/3 of the total 2 hours before bed and the other 1/3 2 hours before that
If you're aware of the NICE guidance, see this particular page which suggestrs that dose can be increased at the rate of 300mg extra per day. I suggest you only take it at night though.
Obviously, read the leaflet and if you have any severe reactions to the drug consult your doctor.
I presume the "painkillers" your Dr refers to are opioids. Opiods can be prescribed for RLS and are effective. Thisis however not becasue they're "painkillers" it's because they are opioids. Other painkillers aren't used for RLS.
Furthermore them being opioids is not a good reason for not prescribing them.
Augmentation is NOT a side effect, it is a MAJ0R COMPLICATION.
Thankyou so much for your very detailed reply. Yes im referring to the rls sensations which are still really strong waking me up periodically. Yes thats what I thought day time splitting dose is not the best advice.My doctor comparing the side effects of ropinorole at the same time as paracetamol is outrageous . Augmentation was never mentioned as were any of potential side effects. I have read how difficult it is to withdraw from this drug as well and the high incidence of augmentation. Yes I've read that it can take a few weeks for gabapentin to kick in . It's distressing feeling spaced out at night like I'm half asleep but I will try amd persevere and up to 3x 100mgs tablets tonight. I think that waking up and putting icepacks on legs might be interfering with the sedative effects of the drug maybe contributing to this state . I also feeL very alert on bedtime although I take tablets 2 hours before .
Yes I think she was referring to opiods as the painkillers. The only one she suggested was cocodamol, which I have previously tried and did nothing for me.
She did not even suggest gabapentin I had to suggest it. She just said ropinorole is the only drug you can have ..take it or leave it and stop dwelling on side effects, if it's not for you then you can come off it.
She gave me no advice with regards ti gabapentin at all.
That I'm afraid, just confirms my view of your Dr. Most GPs are ignorant about RLS and this is understandable. they receive no education about it, it's not a priority.
However her conduct otherwise is unacceptable. As well as being disrespectful, she is contravening the General Medical Council's ethical guidance on shared decision making and consent and possibly breaking the law of informed consent.
I have seen a few GPs about my RLS and three neurolgists, none of these ever mentioned augmentation (even when I was suffering from it) and none of them ever mentioned gabapentin. The last GP I saw openly admitted her ignorance.
Apart from the first neurologist however all of them were quite excellent doctors, respectful, listening and I felt I was part of the decision making process. (Despite it being the wrong decisions).
When I saw the last Dr I was better informed myself and the doctor asked me to pass on some information to her about iron.
(short pause here while I take my first dose of gabapentin for this evening)
I won't go on about it,I suggest you change your doctor.
My goodness. It really is quite shocking how little GPS know about the condition although I do understand it is not a priority. They must see a good amount of people with the condition. All of the most relevant information and relevant drugs and side effects come up on their computers when they access it during a call. You would hope that neurologists as specialists would be well aware of augmentation... that is quite shocking.It's a sad day when patients are much more informed than medical professionals. I was actually informed to drink tonic water by a nurse practitioner that made me laugh.
At least they were respectful and you felt heard and part of the decision making.
Thank you again for taking the time to reply and especially in such detail with such good advice.
Yes more research needs to be done. People tend to think restless legs are a mere nuisance, and don't realise this illness can be totally life changing , and impact on your mental health too. Doctors don't no enough about it, more education is needed.
Am on 6 mg of ropinirole slow release which I take at 7 pm, by 9 pm am zonked out and falling asleep. Luckily I go through the night but still have restless legs all day and evening till meds kick in. Sometimes wish I never went on them but was worse nightmare without them.
I'm glad at least you are sleeping at night, everything is so much worse when you are awake all night too. If ropinorole is working thats the main thing. I have not had much symptoms during the day although can feel it when I sit a while but not like the sensations at night. Mind you I had mild symptoms till a few months ago and it has now escalated very quickly. I was awake 5 times last night often for long spells .
Missiskyedogs, you are taking well over the recommended maximum dose of ropinirole. The fact that you have symptoms during the day may indicate you are developing augmentation. Do read up about this. There is a pinned post, and mire than half of the posts are about augmentation.
If you agree, the way forward is to - slowly!! - reduce your dose. You may need another medicine to deal with the increased symptoms due to each reduction, and you will have to think and decide on an alternative treatment before you stop taking the ropinirole, and even better before you start reducing. The current first line medicines, gabapetin or pregabalin, don't work immediately, but need a few weeks, also to find your lowest effective dose.
Please take this seriously. Most likely you can be better than you are now.
Just to second what Lotte writes. It's fairly apparent you are suffering augmentation caused by the ropinirole.
If you reduce the dose you should find the daytime symptoms get less.
A good reduction plan would be to reduce the daily dose by 0.25 mg every two weeks, or more.
After each reduction you may experience withdrawal effects that start within 24 hours and may get worse for 3 - 4 days then fade and settle after 10 - 14 days.
The bigger the reduction, the more severe the withdrwals will be.
You may find that you may be able to make bigger reductions whilst the dose is above 3 - 4mg, say 0.5mg. Still only every two weeks.
However as the dose gets lower then the withdrawal effects get worse and you may even find you can only tolerate reductions of 0.125mg.
You achieve this by cutting the tablets, BUT you'll probably have to switch to the immediate release version of ropinirole. Cutting an extended release tablet could be dangerous.
The other recommendations for treating augmentation and in fact any case of moderate to severe RLS are iron therapy and exacerbating factors.
Doctors almost invariably ignore these. Tbis is terrible because in some cases attending to these could actually eliminate the need for drugs.
Horizant is now considered the first line drug for RLS. It is a time release form of gabapentin. It is very expensive if your don't have good insurance.
Hi! And, welcome! Don’t feel alone with your RLS. There’s a whole slew of us that suffer with it, me included (I also have MS with my legs affected, [to some degree] so I’ ve been dealt a double whammy!) I also have the cleanest floors, cleanest & softest clothes and the cleanest garage floors this side of the US! Right now I take Ropinirole & 9 times out of 10 it works and THAT is all I need to know! I also take Gabapentin but NOT for my RLS. I have DDD (Degenerative Disk Disease) & take 1800mg a day. I had been taking 2700mg which worked really well but my PC (In his infinite wisdom) said it was too much so now I see Pain Managenent Specialist (Go figure). Did I question any of the above medication? Of. course! But I needed the relief - now! I keep looking for other medications, also. Any medication you take is going to come with warnings BUT that doesn’t mean YOU will have a B problem with it . And we are not “Progessionals” but “normal” everyday loveable people that want to help!
Hi thankyou for welcoming me and replying to my post.Yes agreed, if the meds are working that's the main thing and everyone is different in how they get on with that med. Its a good thing though to feel informed before you give consent to taking a medicine, and to know the options, then you can decide with your doctor on the best medicine to try first.
That's is a shame you have MS and degenerative disc disease too. I have a herniated disc. That is a lot but you still have a sense of humour going on so that's all good. I am in UK and have had covid and my husband now has long covid so its been quite a year.
A couple of items stuck out to me while reading this post. - We all must continue to educate our GP’s. It is such a crime they know nothing or very little about our issues.
- I had never read not to take magnesium within 3 hours of Gabapentin. Thanks for that.
-Manerva, you amaze me with your knowledge of all things rls. Dr Buchfuhrer had recommended I start with 300 mg Gabapentin & work up to 900mg. He didn’t say in what timeline I should increase . Can I build up over the course of as little as 3 days? I ask because I took the 300 mg for a month with absolutely NO effect on my rls. During that time I also took THC containing products to help me sleep but I think the synergistic effect caused me to feel totally wiped out for hours in the morning. I was a walking Zombie. I quit the Gabapentin thinking it simply didn’t work for me but I never increased the dosage. If I try it again, what can I take with it that will cut the symptoms so I can sleep? And how quickly can I increase?
Hi please see NICE guidelines regarding gabapentin dosages for rls. Menerva replied to me (see his post to me) that guidelines state you can increase by 300mgs daily. Sorry I tried to share link but just click on link on his reply to my post. Hope this helps
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