I noticed a post about “had a bad night” and I want to share about mine. I need some advice or at least empathy. Last night was my 2nd worst ever. I had body shakes and almost blacked out at one point.
I had my wife to comfort me because the gabapentin was just not quite doing the job ( I think I may have taken it a little too late). I had to use her walker just to get to the bedroom because my body was convulsing so. Without her I don’t want to think what might have happened.
The problem is I am trying to quit ropinerole, which I have taken for years. I am sure augmentation has set in severely. I was taking 12 mg daily and very gradually tapered to 6mg daily. So now I am trying 3mg and this was my third day on 3mg. I was on 6mg for about 2 - 3 weeks.
The gabapentin has worked good at 3.6 g daily but it makes me groggy- not high just sleepy and listless. But that’s a trade off I will take any day.
So other than just complaining, I am looking for some reassurance because, frankly, this incident frightened me. I felt I was just losing control so to speak. Am I crazy or does anyone else experience these feelings?
Thanks for reading.
Written by
Birdyman
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Withdrawals from DAs is worse than from almost any other substance. But noone seems to know or care.
I'm reckoning that you are trying to come down too quickly. It's fantastic that you've got from 12 to 6, but now is the time to go even more slowly.
I'm not familiar with the dosing structure of Rop, but if it can be divided in any way or form, then you really need to follow that.
10% per week would be a very rough guide, to taper down. And at the end ,you will need Clonidine and valium and shortacting sleep pills. Zolpidem/ Halcyon.or suchlike.
Gabapentin won't help with the withdrawals, but is setting you up for a replacement therapy after the Rop.
I'm sure someone will come on with more specific helo, meanwhile, it would be ok to go back up a step with the Rop, to allow yourself some respite and your body a breather to get used to the new regime for a week or more.
Jesus man, those are very heavy doses of both those drugs.
I see the BNF (medical drug directory) states max dose of ropinirole is 4mg but I am sure the experts say no more than 2mg, so you are still on a high dose. And I would bet a couple of pounds that you are on a high dose for RLS of the gabapentin too.
Are you sure you aren't going too fast coming off the DA? You are much safer taking a slow approach - drop a mg every couple of weeks at most.
I'd also say to be weary of the side effects of the gabapentin as it can cause movement difficulties.
Try hot, and I mean as hot as you can tolerate, baths or showers may offer some temporary relief, as may sex if you are up for it. Stretching, slow, long yoga type stretches can bring some relief. I found massage from my lower back to upper buttocks also helps.
Are you taking anything that could be exacerbating things - caffeine, alcohol and antidepressants can all exacerbate things. May I also suggest dropping gluten and dairy from your diet.
Search gentle iron in the bar at the top right of this page and see if it is something you might try.
Also if available cannabis and kratom can both be very helpful.
Same as that and I used to enjoy me pints. There's talk about me having my passport revoked and sent abroad too (I'm Irish). Although when I go on holidays, which isn't often to be fair, I think f**k it and enjoy a few drinks and tolerate the restlessness if it kicks in, which it shouldn't if I have drunk enough
You are reducing too quickly- no wonder your whole body is spasming/jerking.
Wait until your doctor prescribes 1mg or 0.5mg pills and reduce by 0.5mg every 10 days. It seems that the slower you reduce the better.
As others have said 12mg is way too high for RLS- whoever gave you that dose has been negligent.
The average dose of Gabapentin is 900mg and it can cause dizziness and nausea so increase slowly and monitor the results.
Read everything you can about augmentation and withdrawal and at some point you may need meds to help through the withdrawal , like tramadol and cannabis.
Withdrawal is horrible but it is possible, so well done for getting this far- stay strong.
Thanks for the encouragement. I planned to take some of the steps you outlined already. I am now on 1800 mgdaily. My previous post had a mistake, showing 3.6 g, which is double what the calculation should have been. So should I try to reduce that, too?
Sounds like I may be in for a rough time but you guys are helping.
And basically, anything above a certain level isn’t absorbed. Higher doses are therefore not necessary. Stick with 1800 for now and deal with slow reduction of the Ropinirole.
I second what raffs and joolsg have said. I too was on a very high dose of ropinirole. I was taking 9 mg per day and have tapered down to 2 mg with a view to coming off it completely. I've been reducing by 1 mg per month. It's been bloody hard! RLS symptoms day and night sometimes. Little or no sleep. I just keep looking towards the finishing line, taking one day at a time. I'm currently taking codiene around 7.30pm to help me through. It's not enough tbh. It's 2.15 am and I'm up and about thanks to jumpy legs! I'm going to a sleep clinic in about 5 weeks time. I think you're reducing by far too much. Unfortunately it will take longer to taper down as you've been on such a high dose. Keep strong and we'll get there in the end. Good luck. 🍀👍
Hello Birdyman.
My goodness, it does seem you're having a very hard time and I can to some extent appreciate your predicament. I too, in the past have experienced nocturnal twitchings (body shakes) which I would describe as violent.
At times I thought of them as being a seizure without losing consciousness.
Your experience does sound more severe than my own however, I have never felt remotely like blacking out.
I wouldn't want to falsely reassure you that the body shakes are harmless because there is a danger of injuring yourself, so please be careful. I hope for example that your bed hasn't railings or such that you could injure yourself on.
I also found with my twitchings that they started when I was trying to relax but more usually when I was lying in bed attempting to sleep and they were relieved when I got up and moved about.
These experiences were at their very worst when for some reason I had forgotten to take my nightly medication, pramipexole, another dopamine agonist, (DA), like ropinirole.
This shows that withdrawal effects from a DA can happen within 24 hours and can occur as severe and extreme RLS symptoms.
So at least, I can reassure you that your experience is not unusual and it is DA withdrawal effects.
You have already had some responses from.other members of this community who I recognise as regular contributors who give consistently informed and appropriate advice.
You were, I agree on a massive dose of ropinirole way above any recommended maximum.dose for RLS.
The second reassurance I can give you then is that any (RLS related) problems you were having before you started were probably due to the long term consequences of taking a DA. This means that it is highly likely that instead of relieving your RLS symptoms , the ropinirole was making them worse.
The upside of this is that when you are finally free of the ropinirole your symptoms will actually be better. In addition, the gabapentin should come into its own and control any residual symptoms.
In the meantime, you will unfortunately have to go through the horrors of DA withdrawal. The usual "withdrawal effects" of stopping taking a DA are a temporary worsening of the symptoms. If you were to read up on "Dopamine Agonist Withdrawal Syndrome", (DAWS), which I suggest you do NOT, you would find that DAWS is actually more than simply a worsening of symptoms. It can also cause mental health issues, so part of your withdrawal, although not full blown DAWS, may include feelings of anxiety and depression.
Your attention will be focussed on the physical symptoms, just be aware that you reaction to the experience will be also possibly be affected by these psychological disturbances.
As others say you are reducing the ropinirole much, much too fast, and although I'm sure your anxious to get the task done, you need to have patience and persevere, slowly.
I can say that when I was in a similar situation. I withdraw from the DA I was taking over a period of 10 months. I don't think perhaps you need to take that long, but I agree that the schedule suggested by Jools will be much better. It is a researched and evidenced fact that slower reduction of a DA does reduce withdrawal effects.
I have to contradict other advice given you about sleeping tablets,l
Sorry Madlegs!
I would say you need to avoid using any "Z" or "short acting" drug. These can leave less of a hangover but in folks who've left the bloom.of youth behind them they can cause dangerous sleep disturbances. Mainly, mildly called sleep walking. I have read of folks finding themselves in unusual places and one man repeatefly banging himself agsinst a wall.
A "benzodiazepine" may be safer in this respect. In addition they have a muscle relaxant effect which can help with RLS symptoms. Clonazepam.is the usual one for RLS, Diazepam (Valium) is another.
I'm more directive than raffs, whilst withdrawing from.ropinirole - NO BEERS!
Which brings me to Gabapentin.
I don't know how long you've been taking it and how fast you built up the dose, so please excuse my "supposed tos". You're supposed to start on 300mg a day and then you're supposed to increase it slowly. I was advised to increase by 100mg a day.d
I say this because part of your current experience may be due to increasing the gabapentin too fast, and apparently, too high.
I.hope you have been warned that gabapentin, especially at first, can cause serious drowsiness, dizziness (balance issues) and "gait disturbance", i.e. stumbling. Hence a significant risk of falling over.
No walking frame available for me, I used to literally crawl to bed on all fours.
This should wear off.
Note that gabapentin takes a few weeks to take full effect and has been confirmed to be effective in reducing RLS symptoms when used in conjunction with a DA, but is said NOT too help with withdrawal symptoms. This seems to be somewhat ambiguous so I would say that it is correct to start gabapentin before reducing ropinirole and it will help, but to an upredictable extent.u
As regards the dose of gabapentin. The recommended schedule for conditions that it's l iicensed for is to split the dose to 3 X a day. This information is readily avail able to doctors. The information for gabapentin for RLS is not readily available.
The recommendation for gabapentin is once a day, at night a) because RLS is worse at night b) because you can't fall over in bed!
There are a couple of downsides to this. The simple one.is that taking it all at night, depending on the dose, can leave you drowsy, (dizzy and stumbling), the next morning.
I'm really sorry for being so long winded, I hope it's not putting you off. I can 't help it!
I'm going to break off now and continue in another reply.
Part two, hope you have patience with me.
The next bit is a bit technical and I have been told I "lecture" and it's not untrue. Like any good lecturer however, if there's any questions you have, I'm always willing to stay behind after. If you have a question I can't immediately and I'll go away, find an answer and come back to you.
I'll be as simple as I can
- the latest recommendation I've read for gabapentin for RLS is between 900mg and 1200 mg.
- 900mg is the minimum dose you'd expect to be effective
- you won't completely know how effective the gabapentin is until you've entirely stopped taking ropinirole, for weeks!
- gabapentin is not easily absorbed into your blood and the amount absorbed is not fixed.
- the proportion of gabapentin taken which is absorbed decreases the more you take. Doubling the dose yiu take does not double the amount you actually get.
- there reaches a dose taken after which increasing it any further has no significant increase in benefit. I have read this is about 1200mg.
- after taking gabapentin, maximum.absorption is reached after about 3 hours.
- after 3 hours the amount of gabapentin in the blood starts to fall. The rate at which it falls is measured by its "half life"
- the half life of gabapentin varies around an average of 6 hours. After 6 hours of its maximum only half is left, after another 6 hours only half of that is left, i.e. a quarter, 6 hours later an 8th. and so on.
- if you take half a dose, wait 3 hours, then take the second half, 3 hours after that the amount in your blood stream will be greater than ifnyou'd taken the whole dose at the same time.
- honedt! I've worked it out!
Based on this, bearing in mind, I'm not a doctor and it's up to your prescriber and your choice, I suggest the following
1) reduce the dose to 1200mg, it will reduce side effects
2). reduce the dose gradually by 100mg a day.
3) split the dose to 800mg 2 hours before bedtime AND 400mg 3 hours before that.
This depends on your prescriber letting you have 100mg capsules not just 300mg
If not
1) reduce to 1500 mg day one, then TWO days after that reduce to 1200mg
2). take 900mg 2 hours before bed and 300mg 3 hours before that.
Phew!
Please do not quote me to your doctor, it may cause their adverse reaction. If they refuse to decrease the gabaoentin, you don't have to take it all.
I have to say, neurologists aren't RLS specialists. If you read other posts on this there is ample evidence of this. Not to undermine your trust in your doctors, it woukd have been better if you'd never have been prescribed over 4mg ropinirole and really it would have been better if you had been given a trial of gabapentin at 900mg for a while, not twice as much.
Here's a link to an article written by a professor of neurology and RLS specialist about RLS treatment, You may wish to print this out and show it to your neurologist. Especially the section.on gabapentin.
Hi there I have had a bad night like you I think I was too late taking my meds & suffered badly for it spent the night Irish jigging surprised I never woke my wife I take Pramiprexole at night and I’m not too bad as a rule.i will not be repeating that again hopefully tc &GB
I was on Gabapentin way back when I was diagnosed with RLS did not help was taken off them slowly and since then I have been run the gambit off meds just at the tale end of last year I was prescribed Amatripalin 10 mg at night and it never made any difference I was increased to 20mg with the intention of increasing it to 30mg but at the 20mg stage things started to get out of hand I was collapsing all over the place coming too lying on the floor causing me to get bruises I head butted the window sill in the bathroom 3times when washing my hands the final straw was when I landed on the tv stand tv was pushed to the back on to the floor I don’t know how the stand never shattered I am not talking them now & I have been feeling better
I'm very sorry to hear about your distress so I will be careful with the gabapetin. By the way, I have cut down on the dose by 50%. I am having an on-and-off time of it but I do not feel so groggy.
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RLS in my body 
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RLS for 30 years 
