Gabapentin : have been on Gabapentin on... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin

Catbennie profile image
33 Replies

have been on Gabapentin on and off for approximately 6 months, I’ve tried to keep the dose as low as possible. I started on 100 mg before I went to bed this seemed to work with me only waking up once. It then got worse and I now suffer with pain across my shoulders at night aswell as in my legs, I upped my dose to 200 mg, I also take magnesium glycinate, iron tablets as ferritin below 100, lions mane and Reishi powder. The 200 mg worked for a little while although still waking up twice but bearable but once again my sleep has become bad with my restless legs and my aching back, I must admit because I am against any chemicals being put in my body i sometimes don’t take gaba as I think what good is it doing me because I’ve still got the aching in my body. Am I trying to do this all wrong?

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Catbennie
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33 Replies
grassgree profile image
grassgree

Others will weigh in here with more specifics, but 200 mg of gabapentin is a very lose dose. Space the magnesium at least 2 hours apart from gabapentin. Magnesium and antacids inhibit absorption.

SueJohnson profile image
SueJohnson

Grassgree is right. 200 mg is below the starting dose of 300 mg and well below the usual effective dose of 1200 to 1800 mg. Don't go on and off it. It takes 3 weeks of staying on it to be effective. If you go off it for more than awhile I would imagine that starts the 3 weeks all over again.

Joolsg profile image
Joolsg

I would follow the advice SueJohnson gave you 6 month's ago.RLS doesn't 'disappear' for most of us.

Taking gabapentin occasionally doesn't work because it takes 3 weeks to build up effectiveness. The alternative is to take 30mg codeine occasionally if you only experience RLS once or twice a week.

Taking 100 or 200 won't really help either. The starting dose for RLS is 300.

You need to raise your serum ferritin above 100, preferably 200. Some don't experience relief until it's above 300.

Keep taking the ferrous bisglycinate every other night. It raises levels more quickly.

I'd simply refer you to all the previous advice you've received. None of us want to take meds, but when RLS is moderate to severe and iron infusions have failed, the choice is to either take the meds , or have RLS.

It's all set out in the Mayo Algorithm.

Catbennie profile image
Catbennie in reply toJoolsg

thanks everyone for all your help and advice I did think you would say this. I really wish there was an alternative because these tablets don’t make me feel good

Joolsg profile image
Joolsg in reply toCatbennie

If gabapentin side effects don't agree with you, the alternative is to push for an iron infusion as 60% see dramatic improvement and many can then be med free.Alternative meds after gabapentinoids are low dose opioids. They can sometimes work well if taken for occasional RLS. So 30mg codeine on an as needed basis might help.

Fill out the IRLSS to see what your RLS is. It may be mild, or it may be severe.

If it's moderate to severe and iron infusions don't help, trying a low dose long lasting opioid might be better.

Take the Mayo Algorithm with you to your next appointment and ask GP to read it.

Aujamw profile image
Aujamw in reply toJoolsg

i have a question regarding iron infusions providing relief from RLS. i had an iron infusion the end of May and when i had my Ferritin rechecked it was as i expected naturally high at 500. i was then on 1800 mg and able to reduce gradually to 1200 mg. i am having some what i believe to be side effects from gabapentin. My pharmacy team agreed that the cold intolerance i have been experiencing may be due to the gabapentin since it is often prescribed off label for hot flashes. also i am having weakness in my legs with no other cause identified after testing. my doctor suggested i try to reduce my gabapentin slowly. i am really doing ok with my symptoms now so wonder how much of this is the result of the iron infusion. i really wanted to switch to Lyrica but i feel my doctor is hesitant to do this. i know you have to reduce the meds slowly but i just wondering if anyone has been able to come off meds altogether due to increasing their Ferritin level.

Joolsg profile image
Joolsg in reply toAujamw

I do know of at least 2 people who are med free after iron infusions.You could very slowly reduce gabapentin, that way you won't have side effects. Try reducing by half a 100mg pill a week. I reduced 150mg pregabalin by 6.25mg every 2 weeks and had no side effects at all.

If you think the cold sensations and weak leg are linked to gabapentin, then reducing will also show for sure if that is the case.

Gabapentin and pregabalin do have similar side effects, although some people find one has fewer than the other.

If the RLS starts to play up as you reduce, it would show that the infusions have helped, but not resulted in complete resolution of RLS.

SueJohnson profile image
SueJohnson in reply toCatbennie

When you say they don't make you feel good what do you mean?

You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose. Since 200/6 = 33 and the pregabalin only comes in 25 mg, I would split one tablet in half (use a pill cutter) and take 1 and a half tablets. If that is not enough to stop your RLS, increase it to 2 tablets and a couple days later to 3 tablets. At that point if you have been on gabapentin and pregabalin for 3 weeks, keep continuing increasing every couple of days until you find the dose that works for you.

Catbennie profile image
Catbennie in reply toSueJohnson

I mean feel very groggy in the morning, takes until lunchtime to feel normal, constipated although I am controlling that and wake up with a bad taste in my mouth. I will try 300mg. Should I start late afternoon then give it another 2 hours for 2nd dose and 3rd just before I go to bed. I am seeing doc in 2 weeks so I might change to pregabalin I’ll see how it goes before then, Thanks to you all for your help

grassgree profile image
grassgree in reply toCatbennie

300 mg of gabapentin can be taken all at once, about two hours before bedtime. Absorption is an issue after 600 mg, and that's when you need to space doses apart.

Catbennie profile image
Catbennie in reply tograssgree

Oh didn’t know that but I’d rather space it out than take all at once

SueJohnson profile image
SueJohnson in reply toCatbennie

If you do that you won't get the full benefit.

SueJohnson profile image
SueJohnson in reply toCatbennie

Take it all 1 to 2 hours before you go to bed.

bumblebee_tuna profile image
bumblebee_tuna

Hey Catbennie, I also was not able to tolerate Gabapentin, but I'm tolerating Pregabalin very well even though they are very similar drugs. Might want to give the switch a try.

Catbennie profile image
Catbennie in reply tobumblebee_tuna

Yes I will

RLSHenrik profile image
RLSHenrik

I just started Gabapentin and my personal experience is: 27 mg Iron, 80 mg C vitamin (to assist iron), 600 mg Gabapentin, 0,18 mg pramipexol It is so far working from day 3, allthough a bit groggy through the night.

Carlettejaque profile image
Carlettejaque

Please be aware magnesium affects the effectiveness of Gabapentin. It lessens it quite a bit. I take 2,300mg per day for neuropathic skin pain. It fuddles the brain, causes dizziness and balance problems. You are wise not to have too high a dose. But, having said that, 200mg doesn't do much. You need to consult your doctor to find the right dose.

ciaranxena profile image
ciaranxena

Hi. I disagree with others who say it takes 3 weeks for gaba to work for RLS.. and also disagree that you can't go on and off. I do think that 300 as a starting dose may be more effective. I have been on and off gabapentin for more than a decade. It is immediately effective within 3 hours of consumption (for me). I have had very good results with night time stretches.. . Even middle of the night stretches.. plus using a percussion massager. Everyone is different.. but I find taking 300 mg of gabapentin about 3 hours before bedtime greatly helps.. regardless of how many days it's been in my system.

Kittykipu profile image
Kittykipu

I did get Gabapentin but it never helped me at all, I was on it for about 2 years ,

SueJohnson profile image
SueJohnson in reply toKittykipu

How much were you on? And did you take it in divided doses of 600 mg 2 hours apart?

JacquiiCann profile image
JacquiiCann

Hello. I paid to see a Neurologist and he put me on Tramadol and Gabapentin. I am also on Iron Ferrous tablets and ai take one Magnesium tablet per day.

I have been taking 2 x Tram and Gab at 4pm and again at 9 or 10pm. I've not looked back. I have been taking them for almost a year and not needed to up the dose. I've been sleeping very well without waking.

I have suffered since I was 7 and before the Neurologist I was on the dreaded Pramipexol and Codeine. Took me 2 months to ween myself off. Hell.

My dad is suffering but his doctors are useless. U fortunately there is a shortage of Neurologists about and I am unable to get my dad into see him. I hope you get it sorted.

I pray everyday and am grateful for every night I don't suffer. It may all change but for now I am taking each day as it comes.

Catbennie profile image
Catbennie in reply toJacquiiCann

I must admit I would be a bit worried about taking Tramadol but if it works for you that’s great

FlintHills profile image
FlintHills in reply toCatbennie

What's wrong with Trammadol?

SueJohnson profile image
SueJohnson in reply toFlintHills

The only downside is that it is the only opioid that can possibly lead to augmentation, although nothing like on a DA.

SueJohnson profile image
SueJohnson in reply toJacquiiCann

You may not need the gabapentin at 4:00. When coming off pramipexole you probably had symptoms during the day but you may not have them now that you have been off it. How much are you taking at 4:00 and how much 1 to 2 hours before bed?

Be sure you don't take magnesium within 3 hours of taking gabapentin as it interferes with the absorption of gabapentin. The same thing is true of calcium taken within 2 hours.

I took gabapentine for years until I realised it wasn’t actually doing anything to help my pain sometimes because you want it to help it tricks the brain to thinking it will help I’m sorry if I’m sceptical but please look into if it will actually help you , think careful if it is helping pain as uk GPS are told to use this medication and not opioids please look into to this fully before increasing the dose I really hope it helps but look on the websites for anything to do with medication they all have side effects and are not good for us best wishes to all

Catbennie profile image
Catbennie in reply to

I don’t like putting any chemicals into my body but I will give gabapentin a go for 3 weeks, as the jumping legs and aching back are getting me down due to lack of sleep. Then if no better maybe try legal medicinal cannabis from a registered clinic, opioids fill me with dread. I will also get my iron ferritin levels checked again.

in reply to

Very well put. In my case, not only is it not helping pain, it’s making it worse and adding in extra pain where I had it before.

Rlssucks1 profile image
Rlssucks1

I am going to start by saying that all our body chemistries are different and act differently to certain medications. So maybe asking your doctor or a specialist to take more tests to see why things are not working for you. With so much pain you are experiencing, talking to someone would be your best bet.

I also suffer from RLS and have cut out all sodium, sugar, and caffeine products. I use sodium-free salt (it's really a thing!), sugar-free foods and drinks, and decaf coffee and sodas (caffeine-free, sugar-free Coke). I take gabapentin 300mg, maybe twice or three times a 24hr period. My prescription is to take 1 capsule 3X daily. Things for me are getting better along with physical therapy which I didn't think would work but it did. I hope and pray things will work out for you cause I seriously feel your pain.

SueJohnson profile image
SueJohnson in reply toRlssucks1

Gabapentin is not usually taken 3 times a day unless you have symptoms during the day. The 3 times a day is the way it is prescribed for pain. If you don't have it during the day or suffer from neurological pain, I would suggest you add one of the 300 mg to your night time dose which is still a low dose for gabapentin and reduce the other 300 mg by 100 to 200 mg every couple of weeks. Don't reduce it any faster than that or you will have withdrawal symptoms. If you do it slowly enough you won't have any. Once you have eliminated it you might want to ask the doctor for 100 mg capsules and try reducing the 600 mg. You may find you only need 400 or 500 mg.

I agree with those who who say that you’re on a very small dose but I’d like to weigh in with another point.

I’ve just restarted Gabapentin (not for RLS) after stopping it a couple of years ago. I stopped it because it wasn’t doing much for the Peripheral Neuropathy that I was suffering.

I’m now on 300 mg three times a day and am noticing increased pain where I didn’t have it before and growing depression and anxiety

My legs and joints are stiff and my mobility is worse.

I’m doubting that this drug is the right one for me. The Patient Information Leaflet lists many side effects which I do not want, including muscle pain.

SueJohnson profile image
SueJohnson in reply to

You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.

Ninahoul profile image
Ninahoul in reply to

I can understand . I suffered severe muscular neck/ shoulder pain / spasms after fall on stairs back in Feb and find out also I have mild carpal tunnel syndrome , GP put me on Gabapentin in July starting 300mg increasing to 1,800mg where i started getting bad side effects in August - anxiety , pins and needles in my foot , back pain , until one day was so strong that my body was like on fire , all my muscle was burning and body in pain , bad sleep, couldn’t eat, start loosing movement and couldn’t walk much . Every part of my body was in pain I was in bed 6 days. So my GP said reduce it and every week went down 300mg for 7weeks tapering . I went through hell of withdrawal , lost weight, pain everywhere , anxiety was so bad, but side effects was the same so I know I had to get off it. I am now on 200mg a day spaced through 12h . GP said we go slowly off this last does . My movements came back , anxiety way less and I am started getting energy back .Pain in my muscle still there a bit but appetite it’s better . Walk every day for a bit, distracting myself with little jobs in house and talking a lot to my family and friends , taking care of my daughter all helped me to stay sane and pulling me forward. Yes my neck it’s getting sore again so I started physiotherapy and my hands expiriance pain which I am getting cortisol injection .

Never thought I would experience so much pain and have to endure because of medication . Didn’t work for me. I pray for full recovery for both of us.

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