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Restless Legs Syndrome

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Question for Ellfindoe or Joolsg about Gabapentin please

67Waterman profile image

I have written before, but a quick recap. I was on Ropinirole for around 17 years, starting off with 0.12mg nightly (when I have to confess I thought it was the most wonderful drug in the world as it completely stopped my RLS) to more recently when I have been taking 0.50mg and 0.25mg during the day, but still having RLS. Thanks to this Forum I got the doctor to prescribe Gabapentin. I had a rotator cuff operation a couple of weeks ago and for that the doctor gave me Co-codamol for the pain. I was able to come off the Ropinirole within 3 days with no side effects. On the good side, I have absolutely no RLS during the day time, and much better RLS at night (just shows how the augmentation was working). So I am now on 600mg Gabapentin at 8.00pm and 600mg at 10.00pm. BUT, and this is where I need a bit of advice. Since coming off the Ropinirole and going on to the Gabapentin, I am wide awake (not where your brain cannot stop whirring, just awake as you would be in the day time) at night until about 2.30am / 3.30am when finally I start to get tired. That is when my RLS starts gently and I take another 300mg of Gabapentin, and after half an hour go to sleep. And then I sleep like a log until 8.30am / 9.00am (when usually I am wide awake at 6.00am every morning) and wake up feeling dead as the proverbial dodo for a couple of hours. So ... any suggestions, any advice on sleep patterns, anything at all would be hugely appreciated. With many thanks ,Sally

43 Replies

Great news that you have been able to get off Ropinirole without too much trouble. The wakefulness is a bit of a conundrum as gabapentin and pregabalin are often used as sedating meds.It could still be your body adjusting to the lack of Ropinirole in your system. It can take several months for your body to readjust.

In the meantime, you could try adjusting the timing of the gabapentin to see if it makes any difference. Interesting that you get slight RLS at 3am. That was always when my RLS would wake me. The witching hour!

Maybe try taking 300mg of gabapentin at 8pm, 900mg at 10pm for a while and maybe even the 300mg at midnight.

Often changing the timing can have better results.

If it doesn't settle, you could consider asking for zolpidem sleeping tablets for occasional use, maybe twice a week to see if will get you to sleep a little earlier.

RLS follows the dopamine cycle and that's why many RLS sufferers often have strange sleep cycles.

Another possibility if changing the timing of gabapentin doesn't help is medical cannabis. It can help with sleep but it's not available on the NHS, and costs around £2 a day. I found the cannabis oil with 20% THC would send me into a deep sleep for about 3 to 4 hours from midnight

67Waterman profile image
67Waterman in reply to Joolsg

Thank you Joolsg. I wonder if you know the answer to this. When I used to take Ropinirole, I could count on it working within half a hour. Can / does Gabapentin work in the same way? Ie, should I not take it until my RLS starts, and if I follow this route, will the Gabapentin kick in to work in the same way that my Ropinirole used to do? Big thanks, Sally

Joolsg profile image
Joolsg in reply to 67Waterman

No. It doesn't work like Ropinirole. I was on Ropinirole for over 10 years and it would work within half an hour. Gabapentin and pregabalin don't seem to work in that way. However, they never worked at all for my RLS.Both Gabapentin and pregabalin usually take 3 weeks to be fully effective so clearly work in a different way. They will need to be taken every day to build up effectiveness.

Elffindoe explains in detail about how long it lasts and that higher doses are not absorbed as well.

I think your insomnia will settle in a few weeks so give it time.

67Waterman profile image
67Waterman in reply to Joolsg

Hi Joolsg. You say that Gabapentin and Pregabalin never worked for your RLS. How long did you try them for before you realised your RLS was not improving?

This sounds a silly question, but you come off the Ropinirole, there is a period of withdrawal, during which time you take Gabapentin. I am guessing when you came off the Ropinirole, your RLS became worse or was still there? Or did it get slightly better when you were no longer taking the Ropinirole?

Then you took the Gabapentin for how long before you realised that the RLS was still as bad and that it was not working? Does this make sense? With thanks, Sally

Joolsg profile image
Joolsg in reply to 67Waterman

I was on 4mg Ropinirole, had really bad augmentation so reduced quite quickly to 2mg with no problems. The augmentation settled but returned 3 months later. I reduced from 2mg to 0 over about 3 months and it was absolutely horrendous. Nearly didn't make it ( not an exaggeration). I used tramadol every 4 hours for 3 weeks during last stage of withdrawal but still had terrible RLS. I started gabapentin and was taking 300mg at 10pm and 600mg at midnight and 100 mg of tramadol. After 2 months my RLS was still really, really bad and the side effects from gabapentin were awful so I switched to 20mg Oxycontin. I was on Oxycontin for about 6 weeks and getting 4 hours disrupted sleep still. Then I developed panic attacks so Dr. Buchfuhrer suggested adding 100mg pregabalin to counter the opioid panic attacks. It worked. After 4 years, I slowly reduced pregabalin over 9 months and the panic attacks had gone. My RLS was still very severe.It was clear that pregabalin did nothing for my RLS but did stop opioid panic attacks.

I then switched to Buprenorphine and for the first time in over about 8 years had no RLS and am sleeping 8 hours a night.

I failed tramadol, Oxycontin, pregabalin and gabapentin so it really was the last chance saloon.

Most people do well on Oxycontin alone or pregabalin alone so hopefully you will too.

It's very early days for you. It can take 6 months for the withdrawal from Ropinirole to settle so give it more time and try adjusting the timing of the dose.

67Waterman profile image
67Waterman in reply to Joolsg

My goodness Joolsg, I cannot say how desperately sorry I am to have read your story - I cannot imagine what you have been through, and my heart goes out to you. Such an awfully long time with what would seem like no end in sight and just terrible symptoms. Thank you so much for sharing your story with me. It makes me realise how lucky I have been in terms of severity over the years. With sincere thanks for your advice and kindest regards, Sally

Joolsg profile image
Joolsg in reply to 67Waterman

That's very kind Sally. My situation isn't unusual unfortunately. So many on here have had, or are suffering, terrible augmentation and difficult withdrawals. Also, many people are still getting nightly RLS and haven't found a combination of meds that settles their severe RLS.It's why we have to keep pushing the UK medical profession to learn about RLS and treatments that help. It's an uphill battle but hopefully things will start to change..

JLBowman profile image
JLBowman in reply to Joolsg

Joolsg, I wonder if you would elaborate on the dopamine cycle. I have adhd in addition to RLS along with sleep disordered breathing (no apnea, just hypoxia into the 80% range.) With adhd dopamine is of great interest.

Also, I use cannabis for sleep. Fortunately I live in a state where we can grow our own with a medical card. Most nights it’s as good as Ambien at knocking me out (in addition to 600mg gabapentin and 1,000mg of methorbamol which I take for muscle spasms in the shoulder and neck.)

Thanks for your input.

Joolsg profile image
Joolsg in reply to JLBowman

sleepline.com/sleep-and-dop... dopamine levels drop towards the evening and this is why RLS hits most people in the evening and during the night.

I also found medical cannabis very good for sending me into a deep sleep for 3 or 4 hours. Glad you can grow your own.

67Waterman profile image
67Waterman in reply to Joolsg

By the way, this is a great article. Thank you for always sharing this sort of academia - they really do help in understanding "what we have". And Joolsg, I was so incredibly sorry to learn of the MS. Life often seems so unfair for the nicest people.

Joolsg profile image
Joolsg in reply to 67Waterman

Thanks Waterman, but my MS ( although very aggressive and advanced) is nothing compared to severe RLS. That's why I get so angry over lack of medical teaching. Severe RLS is a more serious and disabling disease than many neurological diseases. It should be covered by disability legislation. And patients should be taken more seriously.

SueJohnson profile image
SueJohnson in reply to Joolsg

Why do you recommend 900 mg in one dose when I suspect you know that above 600 mg it is not well absorbed?

Joolsg profile image
Joolsg in reply to SueJohnson

You're correct. I should have recommended 600mg at the later time, just before bed.

67Waterman profile image
67Waterman in reply to Joolsg

Don't worry Joolsg ... I understood the principle ... am taking 300mg at 5.30pm and 600mg at 7.30pm. Am still getting "gentle" RLS during the night but nothing vicious like before. I will keep on this for four weeks and see if I need to slightly change the times or doses. Many thanks as always, Sally

Joolsg profile image
Joolsg in reply to 67Waterman

👍😊

Elffindoe profile image
Elffindoe in reply to SueJohnson

It's not that 600mg is not well absorbed, it's just not as "proportionately" as well absorbed as 300mg.

Then 900mg is not as proportionately well as absorbed as 600mg, 1200mg not as well as 900mg etc.

There's no fixed threshold or cut off dose for gabapentin above which you can't take any more.

You can take the whole of a dose all at once if you wish. There's a slight advantage to splitting a dose in 2. Not much in splitting it any mote than that

The only guidance I've ever come across states that for total doses above 600mg then you split it into 2 doses, the later dose twice the earlier approximately, if you wish.

E.g. 600 and 300, 800 and 400, 1000 and 500

It's guidance not a rule.

Daily doses go up to 2700mg for RLS OR 1600mg 3 TIMES a day for nerve pain.

If 600mg were the max at any on time then we're taking about splitting it 4.5 times to 8 times a day which appears to be nonsense.

Similarly I've seen it written that if you need more than 1200mg gabapentin then switch to pregabalin.

That's also guidance not a rule.

67Waterman profile image
67Waterman in reply to Elffindoe

Hi Ellfindoe. As always thank you for your posts. Tonight I have taken 300mg at 6.30pm, 600mg at 8.30pm, in bed by 10.00pm, "shuffles" started at 12.30pm. Not getting "shuffles" during the day or during the evening at the moment, which is good, but still do not want to be woken up with RLS at 12.30pm. I fully understand I that I should wait 3 to 4 weeks to see how this beds down. Just thought I would shoot the breeze since I am now up and about. Kind regards, Sally

Elffindoe profile image
Elffindoe in reply to 67Waterman

Thanks Sally, you have given me yet more to think about.

If you read my latest teply in the meanttime I'll get back to you.

SueJohnson profile image
SueJohnson in reply to Elffindoe

I should have said not as well absorbed, not "above 600 mg it is not well absorbed."

According to the Mayo Clinic report "Because of nonlinear kinetics and substantial interindividual variability, the gabapentin dose often does not always reflect serum level, especially at single doses above 600 mg. For this reason, multiple doses of gabapentin, spaced at least 2 hours apart, may be necessary to enhance absorption and efficacy. " Note it says multiple doses of gabapentin, spaced at least 2 hours apart, may be necessary to enhance absorption and efficacy." and that it mentions doses above 600 mg. So not 800 and 400 nor 1000 and 500. And yes - when you get above 1800 mg it doesn' t make sense to split it into 4 doses.

And yes pregabalin is better as you get to higher doses, although I like the convenience of only increasing it by 100 mg when needed.

Elffindoe profile image
Elffindoe in reply to SueJohnson

Perhaps a little ambiguity here.

What the Mayo clinic states concurs with other sources.

When it says multiple doses, it doesn't say they shouldn't be more than 600mg.

The 400/800. etc examples are just that to show how the dose maybe split 1/3 and 2/3.

Since gabapentin can be in 100mg capsules, it's not always.possible to slpit into 3rds.

SueJohnson profile image
SueJohnson in reply to Elffindoe

I'm afraid I have to disagree with you on this. I think it is pretty clear when they say "the gabapentin dose often does not always reflect serum level, especially at single doses above 600 mg. For this reason, multiple doses of gabapentin, spaced at least 2 hours apart, may be necessary to enhance absorption and efficacy." And multiple doses implies more than 2 doses at least in the US. I know you always recommend doses be split 1/3, 2/3. Where do you find this as I haven't seen it? We may just have to agree to disagree.

😀

Elffindoe profile image
Elffindoe in reply to SueJohnson

Hi Sue, of course we can disagree.

Here's the link from which I got the 2/3 - 1/3 split.

uptodate.com/contents/manag...

67Waterman profile image
67Waterman in reply to Elffindoe

For me, this is actually a difficult one to translate as the article says "The usual effective dose is 900 to 2400 mg daily given in a single dose or divided as one-third an hour before symptoms commence and two-thirds before bed." My symptoms generally start a short time after I go to bed at 10..00pm, so reading this, I should take one third (say 400mg) at 9.15pm and two thirds (say 800mg) at 10.00pm. Just 45 minutes between the two?

Elffindoe profile image
Elffindoe in reply to 67Waterman

I'd take it as guidance rather than a fixed medical rule

I believe the idea is to leave a 2 hour gap berween doses. This allows the first dose to be absorbed before the second dose is ingested.

SueJohnson profile image
SueJohnson in reply to Elffindoe

In order to settle the question I emailed Dr. Mark Buchfuhrer. This is what I asked him:

"Which is the best way to take gabapentin if one is taking 1500 mg at night?

1. 300 mg 6 hours before bedtime, 600 mg 4 hours before bedtime, then 600 mg 2 hours before bedtime or

2. Split the dose 1/3, 2/3 which would be 500 mg 4 hours before bedtime and then 1000 mg 2 hours before bedtime."

This is what he answered:

"The issue with gabapentin is that most people (like 75%) do not absorb doses of this drug in doses above 600-900 mg. When you take more (in a single dose), you absorb only a part of the extra (above 600-900 mg) so the extra does not add that much. As such, your first plan is better but you may not absorb a significant amount of your second and third doses as they will likely compete for absorption with the earlier doses."

Thank you Sue. That was kind of you to take time out. My main problem is that I get RLS as soon as I get into bed at 10.00pm and it then lasts 2 to 3 hours. So logically thinking, I am going to take just 900mg a couple of hours before bedtime and see if it whacks it out. And then work upwards from there. Kind regards and thanks again, Sally

SueJohnson profile image
SueJohnson in reply to Elffindoe

I then sent another email to DrBuchfurer and asked him: "If one wanted to stick with gabapentin, would perhaps 600 mg 4 hours before bedtime, then 900 mg 2 hours before bedtime be better than my first plan below? " He answered: "Unlikely"

Elffindoe profile image
Elffindoe in reply to SueJohnson

Thanks

Gosh Sally, sad to hear this.

You've done well to get off ropinirole and noted - no more augmentation.

You weaned off the R VERY fast. The usual rate is to reduce by no more than 0.25mg at a time and no more frequently than once a fortnight.

So for 0.5mg plus 0.25 mg this should take about 6 weeks.

The cocodamol will of course have helped. It's the codeine that helps with withdrawal. I have to say though, that there's not a large amount of codeine, even in prescription cocodamol.

The main purpose of using an opioid is to counteract RLS symptoms, not pain.

Apologies, for this, I'm writing thoughts aloud as it were.

A possibility is that you did wean off the R too fast and although your RLS ( sensory motor symptoms) have declined, the current insomnia is in fact a withdrawal effect.

Adding to this, gabapentin works differently to R. It reduces glutamate which in RLS causes motor symptoms and sleeplessness.

Gabapentin then, PROMOTES sleep, not prevents it. You should be sleeping better!

OK, drawing a line under all that, what can you now do?

My first suggestion would be to assume the insomnia is a withdrawal effect. Hence just give this time and see if it improves, after a few weeks.

That's not all!

1500mg is quite a high dose of gabapentin. I wonder then on what timescale you got up to this dose and when.

The recommended starting dose is 300mg and this can be gradually increased in steps of 300mg until it becomes effective.

This is complicated by two things

1). it can take up to 3 weeks for it to fully work, so you won't really know what dose is going to be effective until after that.

2). It doesn't really work until ALL withdrawal effects have vanished.

This supports my first suggestion, i.e. give it time!

Next, sorry about this technical bit.

Gabapentin takes about 2 - 3 hours to be fully absorbed. It's not that well absorbed anyway.

Once it's absorbed the level falls at the rate of about half every 5 - 7 hours.

Point #1. If you take take 300mg about 3 am, it won't really help until 6am. Too late! This will also make you drowsy in the morning until the level falls

Point #2. The higher the starting level is, (first dose), the more effective it will he AND the longer it will last.

Hence, and only for example ONLY if you took 900mg at 10pm then a). this higher dose may he more effective in starting sleep, b) may be more effective in maintaining sleep for longer and c). may avoid morning drowsiness.

Point #3. You're probably right to split the dose 8pm-10pm. This does have some benefit. However, even more benefit may be gained from taking a higher dose at 10pm and a lower dose at 8pm, roughly, in the ration of 2/3 daily dose at 10 and 1/3 at 8pm.

Point #4. Taking higher and higher doses of gabapentin means absorbing proportionally less of it. About 80% absorption at low doses to as little as 20% at high doses. It's not a fixed thing, but increasing it above 1200mg isn't going to gain much.

One way of getting round this is to switch to pregabalin. 90% of pregabalin is absorbed at ANY dose.

I hope this all makes sense. I've tried to explain why I suggest - -

1). allow time for withdrawals to disappear, gabapentin to achieve full effect

2) rationalise split doses. 1/3 at 8pm, 2/3 at 10pm.

3). One thing at a time. At some point, consider reducing the gabapentin, as it becomes effective OR consider switching to the more potent pregabalin.

If after time this all fails, then there are other options.

Others may suggest adding other drugs e.g. sleeping aids or more opioids.

OK if desperate short, but long term it's better to aim for less, not more drugs.

I can't recall any previous correspondence, Ive had with you, sorry. Hopefully you're aware of the importance of a ferritin level of at least 100 and the avoidance of aggravating factors.

Phew! I hope this helps. Read it later to see if it puts you to sleep.

😀

67Waterman profile image
67Waterman in reply to Elffindoe

Hello Elffindoe. Thank you so much. So, quick summary.

1. Gabapentin takes 2-3 hours to be fully absorbed, so it does not work as quickly as Ropinirole or in the same way.

2. So taking Gabapentin when the RLS starts is pointless, as it will not kick in for said period of time.

3. I tend to go to bed at 10.00pm, so if I want the best sleep, then I should really be taking 300mg at 6.00pm and then 600mg at 8.00pm.

4. Taking the Gabapentin at 3.00am is the reason that I am knocked out at 6.00am onwards!

5. I will assume that the wakefulness is just a part of coming off the Ropinirole. I am just grateful that my RLS symptoms did not worsen when I stopped taking it, and in fact do seem a lot better.

6. I will give this a good six months, and if no better, then I will consider Pregabalin.

7. And yes, am awaiting full iron blood tests. And have read up about glutamate triggering foods.

Thank you again. Would be lost without this Forum. Happy weekend, Sally

Elffindoe profile image
Elffindoe in reply to 67Waterman

1 - Ropinirole may also take 2 hours to be fully absorbed. However, it does NOT work the same way.

2- I found taking a DA like ropinirole AFTER symptoms started did not stop them. I find the same for gabapentin. I don't know how common that is though. They are "preventers" not "relievers".

3- yes. Although some recommendations say 2 hours before symptoms normally start. The question is, do symptoms normally start AFTER you go to bed? Or do they normally start BEFORE?

Hence, go to bed before they normally start and go to sleep immediately.

4 - taking gabapentin at 3am will knock you out about 6am.

5- I can't say 100% that the wakefulnness is due or entirely due to ropinirole withdrawals. It's a distinct possibility. Time will tell! You may know in a few weeks.

6/7 - great!

67Waterman profile image
67Waterman in reply to Elffindoe

Hi Ellfindoe

1. Ropinirole used to work pretty much within half an hour for me. This was especially helpful on planes and in cars when the RLS started and I was unable to get up and walk around. 0.50mg tablet and it would be gone within that time period.

3. Whilst on the Ropinirole, they would often start in the evening prior to bed. Since coming off, I have had no RLS in the evening (although still on co-codamol for shoulder op). I take the 300mg and 600mg Gabapentin, get into bed and am wide awake but no RLS. The RLS only kicks in currently at 3.00am when I start getting tired.

Prior to this, with the Ropinirole, as soon as I started to get tired in the evening, whether this was during the evening or when I went to bed, as soon as that tired feeling started, woomf, the RLS would set in with a vengeance, and I would take the Ropinirole to stop it.

So you see, if I am wide awake for five hours due because of coming off of Ropinirole, but I take the Gabapentin at 6.00pm (1/3) and 8.00pm (2/3) with the plan of going to bed at 10.00pm, if I am still awake at 3.00am when the RLS kicks in because I am finally tired, the Gabapentin will be ineffective by then anyway.

No easy answer - but I will continue with the Gabapentin at the times you suggested for a four month period and see what happens.

Many thanks again to all. Sally

Elffindoe profile image
Elffindoe in reply to 67Waterman

Hi again Sally, this is a little more complicated than I thought.

Bear in mind still that ropinirole is a dopamine agonist drug which works on dopaminergic nerve cells. Gabapentin works on glutaminergic nerve cells. Totally different.

It is fairly clear that you were suffering augmentation due to the ropinirole.

To reiterate, you were taking ropinirole for many years and finally withdrew from it very fast. You may still be experiencing withdrawals at the moment and your current situation is perhaps still partly due to that.

Because you suffered augmentation then it's possible that gabapentin may NOT ultimately work for you at all. See what Jools says.

However, the issue with gabapentin for you goes beyond that singular aspect.

Time to think about your sleep - symptom pattern.

TWO things going on here. Hope I've got it right

ONE you go to bed at 10pm, BUT you don't get to sleep.

TWO your RLS symptoms start at 3am, when you start to get sleepy.

If I'm correct this means your RLS pattern is "normal", i.e. your symptoms start when you get sleepy.

The KEY here may be your circadian rhythms.

Just in case, brief explanation of "circadian".

This reflects the fact that there are many chemicals and processes in the body which go through cyclical variations in round about every 24 hours.

Thus a level of a particular chemical is usually the same at the same time every day. It then goes up then down and possibly up and down again, to end up at the same place after 24 hours.

There are many different rhythms, but they are usually synchronised. (Work together). This is due to a "master clock". The clock can run independently but is easily influenced by 3 factors, one being LIGHT.

Since sunlight levels rise/fall every 24 hours, circadian rhythms are usually 24 hours.

2 rhythms of interest are SLEEP and dopamine.

The lowest level of dopamine is more or less synchronised with the onset of sleep.

Since RLS is associated with low dopamine then symptoms may coincide with onset of sleep. Hence a "normal" RLS pattern.

What's NOT normal, perhaps is going to sleep at 3am! PLUS not getting RLS before that.

THIS may be your problem, your circadian rhythms seem to be several hours out!

This makes it very difficult for me to work out what the gabapentin is actually doing for you.

It makes it impossible to judge if the doses you take in the evening are preventing symptoms or not. They're apparenty not helping sleep.

ONE thing is definite. There is no point at taking gabapentin at 3am!

If you follow the recommended timing for it, it would be to take your main dose about 1am.

This is less than ideal!

I'll have to leave it at that for now.

I'll come back.

67Waterman profile image
67Waterman in reply to Elffindoe

Hi Ellfindoe. Sorry - just received your late posting of this. I think the 3.00am was just a blip. Usually I am early to bed tired (although not being able to sleep because of RLS which kicks in as soon as I get to bed "ie when that tiredness hits) and early to rise awake (awake because of RLS but happy to get up at 6.00am as it is the best time of the day!). Am frustrated because I took 600mg at 8.30pm but 12.30pm have woken up with RLS after having gone to sleep at 10.30pm. I know I just need to get my timings worked out and give it a few weeks. Sleep well and warm regards, Sally

Elffindoe profile image
Elffindoe in reply to 67Waterman

A few simple questions.

Have you ever had any sleep problems that weren't due to RLS?

Did you "normally" go to sleep around about the same time every day or do you if no RLS?

Just eliminating a possible sleep disorder.

Elffindoe profile image
Elffindoe in reply to 67Waterman

PS

Do your RLS symptoms and sleep onset normally coincide?

I'm up for hours yet.

67Waterman profile image
67Waterman in reply to Elffindoe

Hi Elffindoe. Yes, RLS always coincides with tiredness. On long car journeys, if I am wide awake (as passenger!) it's fine - the minute the car rocking starts to get me sleepy, woomf, the RLS starts. Likewise on plane journeys - if I am hooked watched films, not a problem. The minute I start to get weary, woomf, the RLS starts. And at home. In the afternoon, that "grave yard period" at around 3.00pm when one has a bit of a "waves of tireness" period, woomf, the RLS starts. And, of course, in bed. I can go to bed with no RLS, and within 10 minutes it starts.

And yes, I do get up then and wander around, and keep trying, back and forth. Under the Ropinirole, this could last 3 hours. But have to confess, coming off the Ropinirole, the RLS has definitely got less vicious, with only tiny waves in the daytime, and only gentle waves at night. This is with the Gabapentin and Co-codamol for the rotator cuff.

As I said, I will keep going for the next month, but so appreciate you consideration of me. Very much. Kindest regards, Sally

PS ... I am so sorry that you are struggling so much. I wish I could help you as much as you have helped me.

Elffindoe profile image
Elffindoe in reply to 67Waterman

That's really great.

Getting off the ropinirole has rid you of augmentation.

I suggest 300 mg at 6:00 pm, then your 600 mg at 8:00 pm and 600 mg at 10:00 pm. Don't take 900 mg in one dose since it is less absorbed above 600 mg. Also when do you go to bed. If at 10:00, then the gabapentin won't kick in until about 11:00 to 12:00. I go to bed at 10:15 and take my 3 doses at 5:15, 7:15 and 9:15. I also take 1500 mg total.

Hello Sue ... that is so helpful ... actual time and actual amounts. I will follow your suggestion and see how I do over the coming four weeks. I understand that Gabapentin is a "preventer" - that helps. Kind regards, Sally

I finally think that you do NOT have any recognisable sleep disorder.

As you last replied I think it's best to stick to one routine for a while for a whole to see if things settle down.

If you do take later doses take them no later than 12mn.

I do think yout circadian rhythms have got disrupted so some "sleep hygiene" measures may help.

Do try to go to bed at the same time.

There is a 15 minute rule - if you don't fall asleep in 15 mins, get up and do domething for a short while, then try again.

Don't do anything too active in the evening or night. Do things that are mentally distracting.Don't eat too late.

Ensure you have somecdirect exposure to dayight/full spectrun light at least 2 hours per day round about noon.

Avoid all full spectum light emitting device on tge evening i.e. led lighting, backlit devices TV, laptop, tablet, smartphone etc.

Some devices allow automatic display filtering out of blue light overnight.

This is because nerve fibres from the eyes go the pineal gland and a brain centre and light during the day suppresses these.

Dark allows the pineal gland to secrete melatonin.

Hello, very interested to hear how the gabapentin works for you over time, if you are willing to share. I am 9 weeks fully off ropinirole after 4mg/augmentation and a long step-down period and the whole experience has been so heinous that I’m wary of starting another drug, gabapentin or pregabalin being the way I would go next. I can’t tell if I am still suffering withdrawal from ropinirole or if this (up many times a night sometimes for extended periods with either pain, need to move or a mix of both) is just my new normal and I will need to try another drug. Trying to decide when to bite the bullet and try gabapentin, or if I should give things more time to normalise.

Hiya. It is such a difficult position to be in, isn't it.

I started taking the Gabapentin whilst I was coming off of the Ropinirole ... but I was only on a total of 0.75mg Ropinirole daily, so I was able to come off within a week (and due to a rotator cuff operation, I was dosed up with strong painkillers anyway).

My RLS has disappeared during the day time - but I don't know whether that is because I have stopped taking so much (relative) Ropinirole or because of the Gabapentin. At night time I am now taking 900mg Gabapentin at 8.00pm and 600mg at 10.00pm, but am still up for 2 to 3 hours with RLS (although not so severe as it was). This has caused me to resort to retaking 0.125mg Ropinirole (ie minimal amount) every night to stop me going bananas.

I know that Gabapentin takes a few weeks to become effective, so I will keep going with the dosage above, and continue to fall back on my 0.125mg Ropinirole until it works its magic. However, I do believe that Gabapentin does not work for everyone, so we will see. Kind regards, Sally

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