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Restless Legs Syndrome

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Augmentation & No sleep

m1946 profile image
12 Replies

I am in need of help please. Some of you have seen my posts before and the recommendations I have appreciated BUT now I am desperate for a decision which my doctor is unable to commit to!! I have split Ropinirole 0.25mg tablets now for 8 weeks plus and still taking a 50mg Tranadol capsule.

Nothing works now. No sleep at all last night and for the past 10 to 14 days sleep has been getting worse. So I am asking myself why am I taking these meds which I have been used to for some 8 years when nothing now works? But what do I do? I understand an Alpha 2 delta langard is usually prescribed but I have to meet up with someone who will prescribe them for me. What is likely to happen if I double up on the Tramadol to 100mg and now leave Ropinirole altogether? I am incidentally experiencing augmentation in my legs & torso!!

Malcolm

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I'm not 100% clear how much ropinirole you're now taking and if you've reduced it, what dose you originally reduced it from and how fast you've reduced it.

This is a significant factor in working out what's exactly happening to you.

Hopefully you're aware that when you reduce the dose of ropinirole you will experience some withdrawal effects. You may also be aware that the lower the dose of ropinirole gets the worse the withdrawals get at each dose reduction.

The most significant thing you can do to reduce withdrawal effects is to reduce the dose of ropinriole slowly, i.e. in smaller steps over longer periods of time.

A typical schedule for trying to reduce from a higher to a lower dose of ropinirole is to reduce in steps of no more than 0.25mg in no less than 2 weeks.

However, reducing fron a lower dose to nothing may require smaller steps e.g. cuts of 0.125 (or less), over longer times e.g. 4 weeks.

Withdrawal effects are one thing, augmentation is another.

Experiencing symptoms in your legs is not augmentation. Restless legs is normally experienced in the legs. Symptoms in the torso could be augmentation, but augmentation also usually means symptoms in the arms.

If you weren't experiencing symptoms in your arms and torso before you started reducing the ropinriole then it doesn't sound as if you were experiencing augmentation.

Also since ropinirole causes augmentation and withdrawing it decreases augmentation it would appear that any increased symptoms you are now experiencing are most likely to be withdrawal effects, not augmentation.

In which case, withdrawal effects are to be expected and aren't unusual. This is what makes it so difficult to withdraw from dopamine agonists. So much so that some people give up trying.

Tramadol is another issue. Tramadol is also known to cause augmentation or rebound, but again if you've not changed the dose of tramadol and have reduced the ropinirole, any worsening of symptoms is still more likely to be withdrawals not augmentation.

Opioids, like tramadol can also help reduce withdrawal effects. However it seems that you are used to taking it so it may not be so much help. It's inadvisable to stop taking that as well though, that'll be double trouble.

I cannot advise you on how suitable it is to take more tramadol. Although it's not always correct. it would appear that a higher dose means a better effect is feasible. The UK guidance on tramadol (for pain) would suggest that 100mg a day is not excessive. I do think you'de need to OK that with your prescribing doctor.

An alpha 2 delta ligand can replace the ropinirole eventually. It's a good idea to start on one before completely stopping theropinirole as they take a few weeks to start working. However, they aren't particularly good at controlling withdrawal effects. Tramadol will be better for that.

m1946 profile image
m1946 in reply to

HiRopinirole was originally prescribed about 2014 at. 25mg rising rapidly to 0.50mg. About a year ago started to reduce it to 0.25 and for 9 weeks reduced it to .125mg by splitting the tablets?

I believe I am being affected by Augmentation. Yes its in the arms . It makes me want to twitch the body? Difficult to explain.

My real problem atm is that I am losing sleep and last night couldnt sleep at all with my legs jerking at every point when I tried to lay down.

I put some music on and between midnight and 8am I performed 3860 steps and of course I am knackered!

If I take 100mg tramadol tonight at least I will feel that I am trying to do something about my sleep. I am even hallucinating which is quite funny when talking gibberish to my partner Christine

Otherwise I am fit. But this rls is so debilitating

Malcolm

Joolsg profile image
Joolsg in reply tom1946

I would say you are at the worst stage of withdrawal but it will settle about 3 weeks after you drop that last 0.125mg.

Take the Tramadol every 4 hours for the 2 weeks after the last dose of Ropinirole ( Dr. Buchfuhrer advised me to do that) & if you can get cannabis- do so. It gave me 30mins of sleep after days of non stop body spasms and no sleep.

m1946 profile image
m1946 in reply toJoolsg

You are a star. Thank you. I will hang onto your words!!

in reply tom1946

Do as Jools says!

Joolsg profile image
Joolsg

What dose were you on and what dose of Ropinirole are you now taking?

Withdrawal from Ropinirole is hell and the worst stage is tge the 10-14 days after the last dose.

You can take tramadol 50mg every 4 hours during the worst stage But you need a new GP who will do basic RLS research. Pregabalin and opioids are controlled drugs but the only meds available to you.

Read the links Manerva has previously sent you and show to your GP.

NHS & NICE both list pregabalin as drugs for RLS.

m1946 profile image
m1946 in reply toJoolsg

Hi AllI have just enjoyed a wonderful nights sleep!!!

Having suffered at the hands of the Ropinirole withdrawal symptoms rls and possibly augmentation for 12 months, contacting 111 in desperation just to talk to someone about the way forward, then to go onto this trusted site to hear pearls of wisdom from Joolssg & Manerva , I have survived!!

I decided to STOP the dreaded DA Ropinirole after, for the last 9 weeks reducing the 0.25 prescription to 0.125, & swallow two 50mg capsules of Tramadol at about 7pm last night. The transformation within an hour was amazing.

Now I have to convince my surgery to continue and double my prescription of Tramadol at least until another programme can be determined?

The pain in the calfs disappeared, the rls symptoms in my arms and legs disappeared and I was a le to feel relaxed and pur my feet UP without the need to disci every night!! I am 74 by the way.

Thank you for Joolsg & Maberva and all on this site. Let's hope I don't have to return too soon!!!

Malcolm

Joolsg profile image
Joolsg in reply tom1946

Let’s hope it continues. It may take some time to find a combination of meds that gives you adequate cover & your GP needs to step up, read the evidence you send & prescribe either more tramadol or an alternative opioid like oxycontin or Temgesic or Gabapentin/pregabalin.

I’ll keep my fingers crossed for you.

riaward profile image
riaward

Just wanted to say how absolutely great this site is and in particular the support and advise given by some of you guys.I am now off Pramipexole completely, having suffered from augmentation. It took me 6 months to come off 3 x 0.088mg but I followed advise given by Manerva - thank you so so much. It also helped that I bombarded my doctors surgery with letters, detailing some of the comments and reports I have found on this site. That eventually got my doctor to sit up and listen. He prescribed Gabapentin and again, based on some advise given by members of this site, I was allowed to increase the dose from 200mg to 400mg, both of which did not do a thing, to 600mg.........................and it works.

So now I am off Pramipexole and on 600mg Gabapentin. Most nights are good now. I have a little non-medicated weapon as well. On the few occasions (about once or twice a week), when I feel the beginning of RLS when going to bed, I put on my foot wraps. I am one of the most skeptical persons, and I did not think that they help, but they do. Normally my onslaught of RLS stops within 10 minutes, thus I can fall asleep.

Again so many thanks to all of the support I have received and the invaluable advise - you know who you are.

Restlessnomad profile image
Restlessnomad

Sorry to hear you are going through this Malcolm. We all respond differently to meds so what works for me might not work for you. I augmented on Sifrol about 18 months ago. Was weaning off them to go on to Lyrica (Dr decision, not mine). After only 2 weeks I was off both and felt no worse for not taking meds. My GP prescribed Zolpidem for sleeping and they have saved me allowing about 6 hours a night. Still have dailly RLS pain but at least I can sleep and function.

m1946 profile image
m1946 in reply toRestlessnomad

Interesting experience so far after now finally finishing with Ropinirole. I have decided to take 100mg of Tramadol but concerned that here might be better less addictive medz out there. But must admit after takuing 100mg I slept for 9 hours however I tried not taking any the next night and didn't sleep a wink!!. So 100mg it will be tonight!!Now I need to find out an alternative to Tramadol?

Extract from an article

"Although there are limited data on the long-term effects and side effects of DA agonists, there are even less available on the non-DAergic treatments that are commonly used in RLS like gabapentin or the various opiates [14]. Augmentation has not yet been reported for these other types of medications with the exception of tramadol [15,16]. The short observation period in these studies of non-DAergic medications precludes excluding augmentation as a potential long-term consequence. ..."

Joolsg profile image
Joolsg in reply tom1946

Tramadol is known to cause augmentation so it probably is sensible to consider other opioids. I switched to tramadol after augmentation on Ropinirole and it didn’t seem to do much. I was taking it with Gabapentin.

I then switched to pregabalin and OxyContin which gave better coverage BUT the pregabalin caused augmentation after 3 years ( it started in my arm again) so I reduced it over 9 months.

There is a long term opioid study by Dr Winkelman at Massachusetts General in Boston USA which shows all the opioids people are taking and the dose.

Hopefully it will also report if anyone suffers augmentation.

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