Has anyone had any success returning ... - Restless Legs Syn...

Restless Legs Syndrome
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Has anyone had any success returning to using a DA after a few years break ?

mantel
mantel
21 Replies

Hi there

For 15 years I had great success in using 1/2 mg of Ropinerol every night and then it stopped working. After reading about augmentation on here I never went down the path of increasing the dose and switched to Tramadol and Lyrica 100mg of Tramadol and 150 of Lyrica ,they too worked well for nearly 3 years but are now not working so well any more so I had thought about either going back on Ropinerol or another DA. I could increase the Tramadol and Lyrica but Tramadol can keep me awake and so I still don't get sleep and I have tried Lyrica in a higher dose but it makes my legs feel strange and jelly like. Coming off Ropinerol was really horrible because I went cold turkey without cutting down but I got it over and done with in a couple of weeks. I just wondered how any of you who have gone back on DAs after a longish break had got on and if it worked how long did it work for ? Many thanks

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Annieapple

I augmented on all the DA tablets so was switched to other meds in turn which were never as effective as the DA’s. I also couldn’t tolerate the side effects of some of them such as Gabapentin etc. There was nothing left to offer me so after a year off the DA’s the Neurologist (who specialises in movement disorders) told me to try the patch. I have used it for about 3 years now and stuck with 2mg. Because it is long acting it seems to work better than the tablets. Recently my symptoms got worse again and I was in despair as I thought it was augmentation & there is no where to go with meds after this. However my GP told me my BP & Cholesterol were sky high & it took months to sort me out on meds to get that under control.

About 12 weeks ago I started the NHS couch to 5K running program. I run early morning. Part of this is keeping well hydrated so have upped my fluids to 3L a day. It’s proved a blessing! No further RLS and I have had the very painful all over body one for years!! So I am continuing with my patches, running & water!

Hope you are able to get sorted too!

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mantel
mantel
in reply to Annieapple

Thank you for this, I had wondered about trying a patch but I don't know much about them. can a GP prescribe them or does it have to be a consultant? I tried to see a consultant neurologist 3 years ago but they said they did not need to see me and just told my GP what to prescribe luckily it did work until now. They also suggested in the letter to try a DA holiday

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Annieapple
Annieapple
in reply to mantel

Mine was first prescribed by the Neurologist but since then by the GP. As your GP is aware of your RLS I would start there. He/she can always consult a Neurologist for advice if necessary.

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Paneria123

Please can you explain what you mean when you say you ‘augmented all the DA tablets’? I’m not familiar with the abbreviation.

Thank you.

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Lapsedrunner

There’s a pinned post regarding augmentation on the main page. DA refers to dopamine agonist drugs eg pramipexole etc

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Annieapple

Exactly what Lapsedrunner has said!

Sorry I shouldn’t have used abbreviations. 😊

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raffs

I started on Mirapexin, had it increased a few times and then stopped due to side-effects and augmentation.

Fast forward a couple of years later and having gone through a couple of other drugs and getting fed up with Tramadol loosing efficacy I was switched successfully to the Neupro patch which, surprise surprise had to be increased, caused side-effects and augmentation. However for the 1+ years I was on it, it was effective at keeping the RLS under control (initially).

I am very weary of DA's as I find the side-effects to be very difficult to bare and they mess too much with your head- I didn't realise how clouded my judgement was due to the Neupro until I stopped it. For me Opioids are the way forward. I can't remember f you are in the UK but if you are - Targinact is a very good drug imho and has much less negative effects than the DA's. Don't get me wrong, I will likely use a DA in the future when I get back on the druggy-go-round ride but I will keep it short and sweet and then back on the opioids.

Best of luck.

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mantel
mantel
in reply to raffs

In the UK. My best friend worked for the pharmaceutical company that developed Targinact and was was telling me to try it but at the time Ropinerol was doing the trick so i never asked my GP about it. Tramadol does still help with the symptoms but now they return around 2 or 3 am. In order to get relief when I go to bed I have to take my meds no later than 630 pm . I have tried taking a 2nd dose just before I go to sleep but it makes me wake around an hour later and I am wide awake and this feeling lasts until about a hour before I get up , its horrible .I have started using CBD oil too but so far no improvement. I think it is going to be a Juggling game from now on swapping from opiods to DAs and back again with a lot of sleepless nights in between. i fell asleep just after 11pm tonights and it is now 1:30am and i have been awake for an hour so only 1 and a half hours sleep , i very much doubt i will get back to sleep until 5 or 6 and its like this most nights. Any sleeping meds i have tried make the rls unbearable . it is so hard to function at work everyday with so little sleep but then most people on here know exactly what that is like. My bed is a place i long to be in but as soon as i get into it I dread what is to come. I know you understand exactly how that feels. I wish i smoked then i would get hold of some dope , on 2 occasions i have tried it i had great nights. the trouble is most of what is now sold on the street is the more harmful stuff and i don't want to add psychosis to my list of problems .

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raffs
raffs
in reply to mantel

I wouldn't worry about the whole psychosis due to 'crazy death skunk killer weed' as headlined in The Sun or some of its contemporaries - as per most things in life it is based on faulty information. There isn't as much difference in cannabis from the 70's until now as reported by the likes of The Mail, as the initial sample was believed to have been of inferior quality and there was some differences in the measurement, (I can't remember exactly as its some time since I came across this), maybe some difference in the harvest times or the like.

I would say you are FAR more likely to develop psychosis with Mirapex than cannabis. The CBD component is the bit that is meant to protect against psychosis so you could just continue to take the CBD oil. What would concern me more is getting adulterated cannabis - ground glass added to increase weight among other things. Add to that the possibility of coming into contact with gangsters or even worse, the police and cannabis has a number of problems for those of us in the backwaters of Ireland & the UK but is an effective treatment and if you've had good nights when you've got it then if I were in your shoes I'd be getting it!!

So pro cannabis rant over I'd say go for the Targinact, opioids are great and since Tramadol has worked there is every reason to think Oxycondone will work too. Less side effects than the Tramadol and Ropinirole too.

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mantel
mantel
in reply to raffs

I never read the tabloids as they are always full of S*** not to mention the scaremongering . It was a very recent documentary looking into the many benefits of medical marijuana but one of the hospitals who are doing the research were saying around 70% of the stuff on the street was far more dangerous with much higher levels of THC than the stuff than say my older siblings would have been smoking in the 70s. The stuff I had was grown by a friends husband, nestled between his tomato plants in his greenhouse. I totally agree the side effects of most pharmaceutical drugs are far worse. I would love to try Kratom but it is illegal here . May have to go over to Calais every day on Eurostar and take it there as it is legal in France. Hypocritical politicians who took drugs themselves but stop the rest of us using them freely .

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sparker3003
sparker3003
in reply to raffs

Ground glass is a bit extreme, like poop in all ice cubes! Ice is cool so go figure. I'm frustrated that I can't use maryj as its illegal. I can burn diesel and use as much plastic as I like but mj is a no go. I hate takin meds 60mg codeine and 100mg preagablin with 0.5 micro g clomazapam most nights instead of a joint like I did in my 20's.

I use cbd vape and it somehow enables me to stay off tablets during the day so I remain in control, some of the crap they prescribe is horrid. If u won't loose ur job if u get tested go to Amsterdam and u will walk miles and sleep well

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raffs
raffs
in reply to sparker3003

Yeah the glass thing is mad:

ncbi.nlm.nih.gov/pubmed/195...

Another reason why cannabis should be legalised - the quality can be controlled and save anyone getting crap.

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Shumbah
Shumbah
in reply to raffs

Wow that is terrible I had not heard of that . 2 states Australia have just legalised the cultivation of 3 plants for your own personal use . I wish it was in my state .

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Shumbah
Shumbah
in reply to mantel

Hi Raffs

Years ago I tried stillnox when I was not on opioids oh my was that a mistake.

I was a zombie walking into walls bouncing off furniture. It make you so desperate because it makes you really sleep but the legs say NO WAY !

In Australia we have oral marijuana spray called Nannabis /CBD 8.33 THC 8.33 Cbd , terrific for pain relief.

For pain relief I only have to take 4/6 sprays. To stop the movements in my legs 12 to 16 spray . Incredible disease . I don’t smoke but will when I’m desperate . I have someone who source BUSH for me not Hydro.

The best form to have it in for RSL is ingesting as it lasts for longer .

I am taking slow release oxycodone 2 hours before sleep usually just before 9 and 10 mg Stillnox 2 hours later .

I needed something I can travel internationally. When I’m home I have some form of marijuana when needed for the pain it’s brilliant.

All the best 🙂

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raffs
raffs
in reply to Shumbah

Yeah its terrible that we are denied such an effective treatment,

The woman who was looking into legalising cannabis came back and said no, there was no benefit. Her husband is involved in the company that manufactures Sativex (a cannabis spray) which is around 20 times more expensive than it would cost to make it yourself...no wonder they keep it illegal.

I could B1tch about it all day - the rich and powerful do what they want then a poor person steps out of line and they call for their head. We have solicitors and judges snorting cocaine for fun and imprisoning people for using cannabis for health. Its a dirty rotten system.

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Pippins2

Hi, yes I got augmentation after around 7 years on Pramipexole (Mirapex ). Was horrendous getting off it and I had no intention of going back on a dopamine agonists.

However due to being unable to tolerate high doses of opiates and Pregablin and Gabapentin not helping onejot I went onto Neupro patch after around 14 months off DA's .It has the lowest rate of augmentation and I stick to the lowest dose of 1mg. I take a break 3 times a year using Zomorph, sleeping pill and Clonazepam to get me through. I take 1mg patch and a tiny dose of slow release Morphine.

I got the patch from my GP, he wanted me to go on tablet form Pramipexole or Ropinerole but I took in information about augmentation and pleaded my case. The reason GP's don't want you on the patch is down to cost, it is much more expensive than

the pills

I have been on the patch several years. I did at one pointthink I was getting augmentation but it wasn't. It works for me around 90 % of the time and since I am getting better quality sleep since starting bipap probably around over 95 %of the time now

Hope that helps

Pipps x

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Annieapple
Annieapple
in reply to Pippins2

Interested to hear that you take a break from the patch 3 x a year. Do you do that to keep Augmentation away? Also how long are you off it??

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Pippins2
Pippins2
in reply to Annieapple

Hi yes to try to prevent augmentation and also to give my skin a break as I get an allergic reaction from the adhesive backing. I aim for 2 weeks break but don't always make it! X

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Annieapple
Annieapple
in reply to Pippins2

Thanks Pipps! Strangely I find using the patch across my back & shoulders the most effective & the only site where my skin isn’t affected! Xx

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macewan13

I have pretty much the same story as Pippins2 - augmentation on Pranipexole, over to Lyrica and Tramadol (which eventually stopped working) and now back on the 1mg patch, supplemented by codeine or Tramadol. So far, so good.

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mantel

Thank you so much everyone it's the Patch or Targinact then , so far I have been lucky that I have not had any bad side effects from any of the meds i have used so far. The hardest part will be getting to see a GP

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