Gabapentin not working: Hello all, hope... - Restless Legs Syn...

Restless Legs Syndrome
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Gabapentin not working

amdrew_m
amdrew_m

Hello all, hope you are all safe and surviving

I've recently stopped taking Ropinerole (about 3 weeks ago), I was taking 0.5mg a day it had worked fantastic for the first 12-18 months (I miracle cure) but recently its effectiveness had reduced (taking longer to relieve the RLS symptoms at night and wearing off sooner in the morning).

I had read posts about augmentation and that Gabapentin is preferential, I asked about changing to this with my GP. My GP suggested increasing Ropinerole dose although I pushed to change to Gabapentin based on the posts I had read and a fear of making the situation worse.

I'm now on 200mg of Gabapentin and have been for the past week (I stated on 100mg for the first 2 weeks), there has been no miracle relief (as was with Ropinerole) and I'm not certain I have felt any benefit at all with Gabapentin, I've recently started taking the medication earlier in the day (one 100mg at 3.00pm and one at 6.00pm but it seems the RLS symptoms are actually getting worse.

I typically have the RLS symptoms in my arms unless I am travelling/flying although before taking any medication my symptoms were in my legs and arms.

The clinic also tested my bloods and iron levels were normal. My Vitamin D levels were low and I am now taking high strength Vitamin D tablets.

Has anyone had similar experiences? Or comparisons with Ropinerole and Gabapentin?

I'm tempted to go back to the Ropinerole as I am struggling more and more each day as I'm getting very little sleep.

Take care

Andrew

44 Replies
oldestnewest

Hi Andrew. I too was on ropinirole and am on the process of weaning myself off it. I've gone from 8/9mg down to 0.5mg. Your symptoms do suggest augmentation as they are the same as mine when I started to augment. Although you are on a low dose of ropinirole, I wouldn't advise to increase it as I believe in the long run it may make your symptoms worse. Gabapentin usually takes about 3/4 weeks before you notice any benefit. 900mg is the usual dose which is recommended. Some people find that a lower dose can benefit them. It's a bit of a trial and error matter. I'm currently taking 1200mg whilst going through withdrawal.

With regards ropinirole, as it seems it has ceased to be of benefit, I would suggest to try and wean yourself off it but very slowly. You may find that as you haven't been taking it long that the withdrawal might not be too bad. But in the short-term your RLS will probably become worse. There are many pinned posts on here regarding withdrawal and augmentation for you to read. In addition I'm hoping that the more expert advisers on this site will give you the benefit of their suggestions too.

Like you I was also low on vitamin D and am taking a supplement. Have you had your blood ferritin levels checked? They should be at a minimum level of 100.

As it's early morning here in the UK, and I'm using my mobile to respond to you, I apologise for any typos!

There's lots of support on here plus some good advice. You are not alone. Most folks have been or are going through what you are. Stay strong and don't hesitate to ask for any more information. Take care.

Thank you for your reply rls-insomniac, it is a big help to know others are going through a similar process and that it is worthwhile. It sounds like I need to keep at it for a few more weeks and to up the gabapentin dose. I’ll ask my GP for more details of the blood test and in particular ferritin levels. I hadn’t thought about withdrawal symptoms from the ropinerole and did drop down to 0.25 mg for a bout 5 days before stopping completely... the GP had said to stop taking the ropinerole before taking the gabapentin. I do seem to drop off at about 3-4 ish so perhaps the gabapentin is doing something. Hope things continue to improve with you, are you free of RLS symptoms with your current medications?

Hi Andrew. I hope your GP will be helpful in sorting out any medication for you. Manerva has given you some detailed information which should be very useful to you. He is very knowledgeable on RLS and gives good advice.

Unfortunately I'm not free of RLS at all as I'm still weaning off ropinirole and I've still got a bit of a way to go before I will see the fruits of my labours! I'm still suffering with it during the day and also evenings and mornings. I'm currently getting 3/4 hours of interrupted sleep (one hour here, up for an hour, then half an hours sleep and so it goes on). As I was taking ropinirole since 2005 and at a very high dose, my withdrawals are at times, pretty horrendous but I'm determined to get through this. I hope that you will get through yours soon. Only then will you be able to get an idea of how your RLS will be. Some doctors prefer you to go through a "wash out period", ie. no help with medication. I think this is rather cruel and distressing for an individual. If doctors experienced for themselves how some individuals suffer whilst withdrawing, then they might be more sympathetic! They are the ones who prescribed ropinirole in the first place! That said it does work for some people and they don't experience augmentation. Most people are asking for help on this site because their suffering is rather acute and it is very common for them to be experiencing augmentation.

Whilst I'm going through this, not only am I taking gabapentin, but I'm also taking 10 mgs of oxycodon which is a potent opioid. Most doctors will be reluctant to prescribe this. This is only on a short term basis whilst I'm getting through the withdrawal period. Once I'm through this, I'm hoping that my RLS will be such that it is manageable.

I wish you well and hope your symptoms settle down. Any problems, please do contact us on here for support and advice.

It does sound like you are getting there 🤞I’m grateful for the 12-18months relief from RLS but it does feel the symptoms are back for the time, it is horrendous and I wouldn’t wish it on anyone. We are lucky there is support available, HealthUnlocked and medication, I can’t imagine how people got on before the condition was diagnosed 😵 I hope things continue to improve for you 👍

Thank you. I'm keeping everything crossed that things will improve. Having suffered with RLS for over 30 years with ever increasing symptoms does take its toll. But 'm trying to be optimistic that things will get better. I totally empathise with your symptoms and yes, it is a horrendous condition. The sleep deprivation is tough. My other half just doesn't know how to help when I'm going through an episode. He says he feels so frustrated that he can't. I often ask if I could use the chain saw to chop my legs off!! I'm grateful for the support given by this group otherwise I'd probably have gone bonkers by now! I hope things improve for you too. All the best and let us know how you get on when you speak with your doctor. Don't take no for an answer from them!

Hidden
Hidden
in reply to amdrew_m

Taper taper taper from everything they give you.

Not worth exaggerated withdrawal symptoms.

Getting a great bit of help from kratom and tomorrow I will add a small dose of a benzos to help.

Hope you find what's best for you.

And you get relief

Sorry Andrew I see that you've already stopped taking ropinirole. I misread your post.

You may still be suffering withdrawal symptoms. You might find that by increasing the gabapentin dose may help you. But as I said previously out does take 3/4 weeks to kick in and of the dose is increased it won't help straight away.

There are other options available of this doesn't work and you will need to see you're GP to discuss these. If they aren't knowledgeable in RLS ask for a referral to someone who is.

Again others on this site may suggest some options for you.

Sorry about my previous post, it's early hours, no glasses on plus small print on my mobile!! 😂

Hi there

rls-insomniac makes some good points. If you've only recently stopped ropinorole, you may still be experiencing withdrawal symptoms.

If you've only recently started taking gabapentin then it takes a few weeks to become fully effective.

,You will probably need at least 900mg and if you want it to be effective when you most need it, then it's best to take it 2 hours before bed time. You can increase it by 100mg a day or 300mg in 3 days. Capsules come in a 300mg strength.

Some people need more than 900mg.

If you take it earlier because you have symptoms earlier, that's probably withdrawals

An opiate would help, as your doctor will probably refuse to prescribe one, you could try paracetamol and codeine for a short time.

"Iron levels normal" doesn't really mean anything. The most appropriate test for RLS is ferritin. If they tested your ferritin level and said it was normal, for somebody with RLS " normal" is not sufficient.

Normal is anything above 15ug/L. Some doctors seem to believe it should be at least 50ug/L, but for someone with RLS it's best if it's at least 100ug/L.

So, find out if they did a ferritin test and if so, what was the result.

If is below 100ug/L then you could start taking an iron supplement.

The vitamin D should help.

It would be a good idea to wait for the ropinirole withdrawals to wear off, take at least 900mg gabapentin and give it a few weeks to work before deciding it's not workng. 200mg is totally insufficient.

Heres a link to more information

uptodate.com/contents/treat...

amdrew_m
amdrew_m
in reply to Manerva

Thank you for the reply Manerva and the extra detail regarding the ferritin levels, I will use this when I speak with my GP. I do take multivitamins with iron although these are a supermarket brand and only contain 14mg iron. I will also ask to increase my dose and hope for some relief in the next few days/weeks. Thanks again. Andrew

Joolsg
Joolsg
in reply to amdrew_m

I agree with Manerva. Ropinirole withdrawal can last many weeks ( in my case months) and the Gabapentin takes at least 3 weeks to be fully effective. 200mg is too low for RLS. 900 is the average dose but increase slowly- not all at once.

You should find you only need to take it in the evening- say 300mg 2 hours before bed and 600mg immediately before bed, but it can take a while to find what timing works for you. If you only suffer the RLS at night or in the evening then there’s no need to take Gabapentin in the day as it can make you sleepy ( and dizzy).

Hope it works for you.

I needed to take an opioid ( OxyContin) as the Gabapentin didn’t agree with me. Sometimes a low dose of 2 meds can work better than a high dose of one, so if Gabapentin doesn’t help after a month or so, consider asking for a small dose of OxyContin, although most GPs in the UK will be reluctant to prescribe opioids.

I hope the Gabapentin alone helps at higher dose.

amdrew_m
amdrew_m
in reply to Joolsg

Hi Joolsg, thank you for your reply and all the detailed information. I will stick it out and hope a higher dose of gabapentin sorts things. I am fortunate that the rls symptoms are mostly at night although I’m usually busy during the day so might not notice as much. I haven’t felt dizzy with the gabapentin but have had some very exhausted mornings and afternoons, I thought it was the gabapentin kicking in at the wrong time but it could just be lack of sleep. How did the gabapentin not agree with you? Thank you again, Andrew

Joolsg
Joolsg
in reply to amdrew_m

Hi Andrew. It made me very dizzy, I lost my balance, severe double vision & severe diarrhoea.

I actually switched to a very low dose of a similar drug, pregabalin, which is better absorbed so you can use a smaller dose. However, everyone reacts very differently to drugs so it’s a case of trial and error.

Sadly, nothing has ever had the same initial miraculous effect of Ropinirole BUT after suffering severe augmentation and an horrendous withdrawal, I would never touch another DA.

Apparently methadone or buprenorphine have a similar effect as Ropinirole for many people but we cannot get it for RLS here in the UK ( unless we find a forward thinking rogue neurologist!).

Good luck.

amdrew_m
amdrew_m
in reply to Joolsg

And you Joolsg, I'll also make a note of pregabalin should I have difficulty with gabapentin. Many thanks

Hi Andrew! Hang in there. It took me months to get through the withdrawal from Mirapex. I took Gabapentin ...900 mg and did not get any relief. One doctor suggested upping the dose. I am now on 2100 mg which I spread out through the day and evening. I had been off the Mirapex for almost a year before I went on the high dose of Gabapentin. I rarely get any sensations of RLS. Best to you. Mary Ann

amdrew_m
amdrew_m
in reply to MATTIELUKE

Many thanks Mary Ann, it is a huge relief to know Gabapentin can work. I did have a slightly better night yesterday so perhaps things are improving although 2100mg sounds a lot... is that 21 tablets a day!

Stdorn
Stdorn
in reply to amdrew_m

Gabapentin also comes in 300mg 400mg and 800mg doses

amdrew_m
amdrew_m
in reply to Stdorn

Thanks for this Stdorn :)

I would also suggest you go back to Ropinerole, it takes at least an hour to be effective and yes, increase the dose,, the strength I take is a 1 mg tablet and I take three a night,

amdrew_m
amdrew_m
in reply to Zadoc

Hi Zadoc, I'm hoping the gabapentin will work although I don't think I had it particular bad with the ropinerole. I was concerned about increasing the dose and suffering with augmentation/withdrawal, it appears to affect some people terribly.

How long have you been using ropinrole? Have you always been using 3mg per night or needed to increase to this dose over a period of time?

Joolsg
Joolsg
in reply to Zadoc

The new recommended maximum dose of Ropinirole amongst RLS experts ( that doesn’t include GPs or general neurologists) is 1mg a day so be careful. Look out for signs of Augmentation.

Joolsg
Joolsg
in reply to Zadoc

I also see from your profile that you are suffering augmentation from the Ropinirole. It has spread to your shoulders and arms. That’s a clear sign of Augmentation so you really need to consider getting off Ropinirole and switching to Pregabalin or Gabapentin. Please read the pinned post on Augmentation at the top of this page.

I’ve been taking Ropinrole for 13 years and to start with it was amazing! It wasn’t working so well, so my Doctor put me on Gabapentin, which worked brilliantly for 6 months. Now my legs are terrible all evening and only calm after midnight! So difficult to enjoy anything during the evening! Trying to come off Ropinrole, but I have no idea what to do next!

amdrew_m
amdrew_m
in reply to Bee27

Hi Bee27, my GP advised not to take ropinerole and gabapentin at the same time although I don't think he is a specialist. I was only taking 0.5mg of ropinerole and reduced this to 0.25mg for a week before stopping completely... I have struggled since mind and this might be withdrawal... I'm hopeful the gabapentin will start to work in time and as I increase the dose. Others have replied and mentioned Pregabalin and OxyContin although I have no experience with these. Good luck Bee27 :)

Bee27
Bee27
in reply to amdrew_m

Thanks. Good luck!

Bee

Nlthomp
Nlthomp
in reply to Bee27

Hi Bee. I was augmenting from Ropinirole and started taking 900mg Gabapentin. Unfortunately, it didn’t work for me. I am currently takin 75mg of Pregabalin and 50mg of Tramadol, as I very slowly continue to try to wean off the Ropinirole. That combination is working very well for me. I also take a hot shower before bedtime. Weaning off of a DA has been hell, but I’ll keep trying. Best of luck to you.

Bee27
Bee27
in reply to Nlthomp

Thank, I think I’ll need it! I’ve so far cut Ropinrole from 1mg to 0.75mg, which hasn’t made any real difference, so we will see what happens as I lower.

If you go back on ropinerole it is almost inevitable that you will find yourself having to increase the dose continuously over time to achieve relief and the withdrawal is typically worse when the dose is higher. To put it in context, courtesy of my rls, I have withdrawn from opioids and from dopamine agonists (mirapexin which is in the same 'family' as ropinerole) and the dopamine agonist withdrawal was worse than opioid withdrawal (which was also pretty awful).

I'm not sure if this point has been made already, but while your body is withdrawing from ropinerole, you will experience increased intensity of symptoms and gabapentin will typically not be effective to quell these. It is only once you have washed out the ropinerole completely that you will be able to judge whether gabapentin is the drug for you. It works well for many sufferers but there are others for whom it is ineffective and/or the side effects are intolerable.

I would second what Manerva says that you need to get the actual figure for your serum ferritin level and make sure to take a supplement (iron specific - most people on here use 'gentle' iron aka iron bisglycinate) if it is less than 100. Raising iron levels results in alleviation of symptoms for many sufferers. Iron supplementation can be tricky. It is best taken on an empty stomach and not to eat for at least an hour afterwards. Some sufferers find that they gain relief if they take iron at bedtime.

It is a very difficult process you are going through and does take a while as Julesg has indicated. It is important not to get too disheartened. Most people are delighted when they finally get the dopamine agonist (ropinerole in your case) washed out of their system. I would say that it is preferable to persist with withdrawing from ropinerole to get an idea of what other treatment options work for you than to revert to that drug now.

It may be worth trawling through the many posts on here for some of the measures that afford temporary relief when symptoms are bad during the night. I find cold water applied to the legs for 10 minutes or so is quite useful. Also a cup of coffee is effective for many people (adenosine receptors are involved here). Codeine can help (solpadene is available otc). Yoga stretches (difficult to get the motivation in the middle of the night but they can afford a few hours of relief from symptoms). A very absorbing activity such as computer games or online puzzles is surprisingly effective. There are many other suggestions on here for relief from this ridiculously idiosyncratic, difficult condition.

Good luck!

Thank you for the detailed reply involuntarydancer particularly the withdrawal process, I have had a couple of slightly better nights and I am hoping this continues as I keep away from the Ropinerole. I have an appointment with my GP tomorrow and hope to know more about my serum ferritin levels.

Yes. I take 2 of the ropinole at night for RLS(Physical) and I take two of the gabapentine capsules. Be aware Ropinrole is for RLS. Gabapitine is for NERVE REPAIR. They compliment each other. During the day, if I start to doze it triggers RLS. So, I take .5 Ropinole before noon and evening meals. This is with in 2.0 mg total for ropipinol. For RLS you have to switch to the 600mg pills with brand Horizon to be effective with RLS. You are on a different brand.Their is another brand for shingles. So, your Doc. may not know this, USA not UK. Confused? I am without RLS using both together as indicated.( For me only---See your doc or a Motion Neurologist)

amdrew_m
amdrew_m
in reply to bill54321

Thanks bill54321, good to know about the 600mg pills... I don't think I would manage 9 separate 100mg pills a day on top of the other vitamins and home remedy types :)

Hi, Gabapentin did nothing for me. I’ve been on Ropinerol for 10 years. I had to increase dosage for the first 7 years until I was taking 2 mg daily. It seems to be tapering now, and ridding myself of sugar and gluten also helps. I exercise regularly and it worsens if I don’t. I now take 1.5-2 mg daily. Supposedly as you age it can get better. I’m 56.

amdrew_m
amdrew_m
in reply to HInerk

I hope it eases with age, I exercise but find it can make the sensations in my arms worse if I have been to the gym that day. Good luck HInerk

I take 0.5mg ropinirole mid-day and again in the evening, down from 1mg and 2mg, but have also been taking Gabapentin pretty long term for nerve and osteoarthritis pain. I take 900mg lunch time and 1200mgs around 9pm, but even this doesn't always work and my average sleep is around 4hrs. Some nights I don't even bother going to bed my legs are working nineteen-to-the-dozen! The only side effect I've noticed with Gabapentin is weight gain (not good for arthritic joints). You'll find loads of help on this site - god luck with it all!

Many thanks oldfidgetlegs, yes I think I am getting 4 hours at the moment and that is broken 45 mins her and there... I wont manage like this long term, good luck :)

Hey Andrew. I followed the same path you seem to be on, rope which worked until it didn't followed by augmentation then gaba with little to no relief. Dosage adjustment didn't seem to make any difference and in fact at times I thought it worsened the condition. Then with much reservation I was switched to Norco (with 5mg. opioid Hydrocodone) by my sleep doc (in the US). That was a 3 years ago, and it has been a miracle drug for me. It takes about an hour to take effect and lasts long enough to get a decent night sleep. The only side effect is constipation, which is a lot easier to deal with. Good luck

amdrew_m
amdrew_m
in reply to JakeRLS

Thank you JakeRLS, I've made a note of Norco, although hopefully I have better luck with the gabapentin. I hope the medication continues to work for you, RLS is horrible :(

I have been taking Gabapentin with good results. I recommendation would be to increase dosage. 200 mg is not enough in my opinion. It's been a lifesaver for me because it also improves my sleep a great deal and I've always been an insomniac. Good luck

amdrew_m
amdrew_m
in reply to randyrue

Thank you randyrue, sounds very positive, I hope I have the same success you have had. What mg are you taking now? Is this fixed or do you find you need to up it occasionally?

randyrue
randyrue
in reply to amdrew_m

I am now taking 1800 mg, 6 00 three times a day. I have numerous nerve pain and arthritis, also insomnia plus RLS. As of now I'm maintaining this dosage and it has improved my life a great deal. I've been doing this for about 3 months and I hope this success continues. Good luck with yours

You were on a very low dose of ropinole .5mg ..I started out at 2 mg 10 years ago..and I am now on 4mg..at night and my RLS is greatly improved. I also take gabapentin 3 300mg 3 x a day..for my nerve pain it doesnt relieve RLS at all for me.. I would ask Dr to put you back on Ropinole at a higher dose than.5 and see if that helps,,, you must be so miserable.

Thank you for the support travelingannie, I have been miserable having come off the ropinerole and experienced all the same horrible RLS feelings I had before. Fortunately I don't have nerve pain, or not that I know of :) Things appear to be improving these last few nights and I probably had 4 hours of broken sleep last night... far from ideal, I remember enjoying going to bed in the early days of ropinerole, at he moment I'm dreading it again :(

I would try to get on a higher dose. I started at 300mg x3/day and now take 400mg 4x/day they even make an 800mg pill. Its my understanding gabapentin is a very safe drug ie. Cant really od from it. I didnt even know they made such a small dose.

Thanks Stdorn,I've got a call with my GP tomorrow and will ask to up the dosage... the 100mg tablets look to be same size as a standard paracetamol, 800mg must be the size of a golf ball :)

I do not have exactly the same experience but gabapentin made me depressed before it helped my legs (I have PLMS). BUT Lyrica has been a miracle so far (third month). Don't give up.

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