Hi posted a couple of weeks ago to say I was revisiting Dr. I have weaned off ropinrole then mirplexin was at wits end with no sleep, anyway saw a different doctor and did persuade him to prescribe pregabalin he was not sure of the dose required for rls and gave 25mg tablets and said to go up gradually 1st night 1 tablet no sleep 2nd night 2 tablets and slept but did not sleep following night so up again to 75mg which gave me 2 nights sleep (all interrupted 3/4 times but sleep) so have now put up to 100mg had 3 reasonable nights and then last night no sleep again, Would be grateful for your views on this should I up again ? or is it just not working for me?
Thanks
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Operababe
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According to my neurologist, Lyrica is supposed to enter the system quite quickly. Even though that might be what literature says, I have learned that what literature says and what one experiences can be two different things. It might be that you need to give Lyrica more time to work.
Thank you Jess I had kind of thought that it's just so disappointing when you're hoping for a good nights sleep and your up doing a marathon around the house. To think I use to take sleep so much for granted none of us do that now!!
Not long really only about 2.5 weeks but just hoping for some relief having augmented on ropinerole after 3years I managed to get off it I was then given mirapexin and obviously argumented on that after just 2mths, so sleep as been a rare luxury I know you've had a really tough time with rls and will understand. But anyway positive thinking hopefully this will work for me
Best wishes to you, your so kind and supportive to others
Yep, I definitely understand and empathize. RLS tests us in every way possible. With this syndrome I find strengths I didn’t know I had (and we’re not talking about the answers you would give to an interviewer’s «what are your strengths»). I can see it now...
Interviewer: what would you say your three main strengths are?
Me: let’s see... not punching you in the face for wasting my time, not passing out due to extreme exhaustion, and staying awake even though I can’t sleep at night and therefore could quite possibility be on the verge of a psychotic break.
Since everyone is different, it might just be that it hasn’t kicked in yet. I hope that’s the case for you. Even so, if you haven’t already done so you may want to let your doctor know.
Best wishes to you as well!
Hi, I think that's quite a low dose you started on. Though that's a good thing - always best to start low as you want to take the minimum amount that helps. When I was on Pregabalin I started at 50mg for a week, then 100mg for a week, then 150mg. At which point I stopped because it wasn't helping and the side effects were horrid. I think I read somewhere a dose of around 300mg is usual for RLS. If you are not getting side effects but getting some sleep maybe stick with it for a few more days on 100mg to see how it goes, then think about going up to 125 and then 150. But I'd check in with your doctor first.
Thank you good advice I seem to be lucky no real side affect, had a couple to start with but they have vanished, so will continue and keep my fingers crossed. There's not a lot of choice out there.
It worked well for me in the beginning, but then it seemed to not work as well after the first month. I am now trying to wean off/down on them because I don't like the side effects.
I am going through a similar process at the moment
I started Pregabalin on 1st January having weaned off Ropinirole by 19th December. I'm no certain what effect it is having. I did 50mg for two weeks then 100mg for 10 days and am now on 150mg, which is where I'd like to stop. These doses were given by a neurologist (though I'm not convinced her really knows anything up-to-date about RLS) and my GP (who admits to knowing less thatn I do).
I get the feeling it is having some effect with the RLS but I am yet to wean off the Oxycodone and codeine that I've been taking. I have cut out one 5mg Oxyx during the night so take only one 5mg of Oxyc at bedtime plus 30mg codeine. However, when I wake up in the night I have been taking a top up of 30mg codeine. If I try only 15mg top up I have a less good three hours or so with the tension building up in my arms (in particular) and then some jerking.
I have also put on weight but notice that it may well be fluid since my wrists and ankles are a little puffy (I am very slim and this is unusual for me).
I'm certainly not giving up on Pregabalin until I try hard to reduce the opiates. Maybe I will need to stay on it as Gabapentin seems to be the only other alternative and I doubt that would work better than Pregabalin (am I right in thinking this way?).
I'd be interested to know from TATTiana what your awful side effects were, please. I know others (eg, Pam34) who seem to be coping well on Pregabalin.
So, not sure this will help you, Operababe, but it is one other person's current experience to compare with yours.
all the best - and well done for cutting out the dreadful DAs!
Hi RosieRow. The side effects I had with Pregabalin, with hindsight, started quite quickly but it was the first med I was put on and I foolishly expected it to work - so initially I thought the fact it wasn't working and making me feel even more groggy than normal was because I wasn't taking enough and I increased the dose. I had water retention, weight gain, nausea, vomiting, my calves twitched all day long (I have PLMS not RLS so that was weird for me). But worst of all was feeling absolutely miserable and tearful all the time. Sleep consultant hadn't warned me about side effects, and it was an occupational health GP I saw who told me that some people do really badly on Pregabalin, whatever it is prescribed for.
Like you, I wonder whether it is worth trying Gabapentin if Pregabalin didn't work for me, particularly (for me) as Gabapentin has a similar side effect profile.
Thanks TATTiana - I couldn't be sure if the fluid retention is a build up from the Oxycodone or the Pregabalin. I'll still keep an open mind and not worry if it doesn't get worse but I have put on nearly half a stone - and I never put weight on unless it is a side-effect of some medication or another. I'm also feeling quite tired but, again, think that this is as much to do with the Oxyc as anything else as I have been much better since I stopped taking the second capsule. But I can be sitting at my computer, or even talking to other people, and totally unable to keep my eyes open or concentrate on what I'm doing, and literally fall asleep. I may be retired but what I'm doing is important and time consuming so I'm not too keen on having to take a break for a power nap for 20 mins - and then feel tired again a couple of hours later!
I'm not (yet) tearful or miserable but I am tending towards anxiety - though that's not been unusual for me the past six years. No vomiting or nausea or calf twitching. You certainly did have a lot of side-effects, even one of which is not great, but all of them must have been quite dire. No wonder you came off it. What other meds do you take now?
It's so hard, isn't it, to know what symptoms are the condition, side effects or even something else altogether. And then how to go about working out which it is without risking everything! Falling asleep as you are is really not good though. I hope you work out the answer.
I am not currently on any prescribed meds. My last try was oxy but it kept me awake but for a couple of hours of bad dreams around dawn which worsened my anxiety. My consultant is rubbish but months until next appointment and GPs admit they know nothing and won't prescribe. But as none of the meds helped and most gave me side effects, I am no worse off taking nothing...except all the supplements, none of which seem to help either! Big sigh.
Gosh sounds like you have it pretty tough it seems that only the people suffering with this awful condition really appreciate how bad and life changing it can be. The GP'S just nod their heads and seem to think your exaggerating one even said to me oh yes I had that when I was pregnant. When I asked her what she took she told me she just managed and proceed to prescribe another DA medication even when I questioned wether I should having augmented on ropinerole. It just seems so hopeless sometimes.
Well having had no sleep again last night I am going to up the pregablan to 125mg tonight and see if I can sleep. Couldn't get a Dr's appointment until the 11th February with the Dr that prescribed the pregablain so will have to just battle through.
It's always good to hear how others are getting on like you say we seem to be in a similar position although I'm not taking any other meds. I too had hoped I would be able to cut off no higher than 150mg so a little leeway yet it's just so disappointing when you have to keep ramping it up when you've achieved a couple of reasonable nights sleep. Still fingers crossed. Hope you find some rest with yours
I hope you, too, find what works for you. We both may yet find that Pregabalin works. When I started increasing too quickly and weaning off the opiates at the same time, I was reminded that it can take some time for the DA to wash out and for any new medication to take effect, so I do need to give it time before making any rash decisions. After all, there aren't many more options left for me if it's no DAs, no opiates, and no Pregabalin or Gabapentin. At least you're not on any other meds. Some people are convinced that diet changes work for them. the changes I have made have seemed to have no effect - even cutting out sugar doesn't make a difference!
I've been reading this thread and thought I'd add my experience. After augmentation on ropinirole, it took me about 5-6 months to find the right combination of meds that worked for me. I started on Tramadol and gabapentin and am now on oxycontin and pregabalin.
Pregabalin and gabapentin will take about 3 weeks after the last dose of dopamine agonist to be effective, and bear in mind that withdrawal from DAs can take months to resolve.
Pregabalin dose should be increased every 4/5 days by 25mg and once at 150mg I would advise waiting for at least 7-10 days to see if the RLS settles. If not, then you could add an opioid at low dose as 2 meds at low dose often work better than one. Some people are on up to 300mg but it's best to wait awhile to see if 150mg becomes effective once the withdrawal symptoms from Ropinirole have settled.
Also, if stopping oxycodone (Rosie), RLS is actually a side effect so it could be that stopping oxycodone is exacerbating your RLS, although it will resolve once your body adjusts to the lower oxy dose.
I had terrible side effects with both Gabapentin and pregabalin. On Gabapentin I was dizzy and had awful diarrhoea. On pregabalin I had double vision, dizziness and water retention around my ankles. The side effects of pregabalin wore off after 3 months and all the water retention has gone and I only have double vision for about 15 minutes in the morning.
I took pregabalin at night, never in the day as I think the dizziness and sleepiness would be much more pronounced.
Thank you Joolsg a lot of good advice there I had only been off the mirapexin for about 10 days so probably a few issues still going on although had only been on it for a short time. Actually slept okish last night so maybe getting my chin down before giving it much of a chance, feeling much more optimistic with advice from all you guys thanks
Thanks for your help. It's amazing how encouraging it is to hear from so many people all trying to pool their individual experiences so that others can try to work out what's right for them. I would love to have stayed on Ropinirole but I couldn't face the thought of trying to get off an even bigger dose and had to take the plunge.
I certainly have some fluid retention having put on 8lbs. Looking back, I think I did have an adverse effect of RLS when I first tried to go from 10mg to 5mg Oxycodone but I have juggled it with codeine and the last couple of nights have even been taking only 45mg codeine instead of 60. I think that, when I can cut down even more I shall try cutting out the Oxyc and upping the codeine instead. I can then cut that down more easily as the tablets can be cut down even more to take it slowly.
I also realise that I haven't been taking anywhere near as much CBD oil as I could - the instructions on the bottle were confusing! So I may try taking more of that to help with cutting out the Oxyc. But I come up with all these grand ideas and then have to rethink when they don't work!!!! Such is life. But I can't even begin to think that I could cope with no medication at all, nice though that would be.
Operababe - I hope things continue better for you.
Hi again! I was headed back over to this thread to say something else, but I see that Joolsg already covered it (I think; I'm tired this morning, so let me know if she covered this).
It could be that withdrawal from the DA is still going on, meaning that the DA isn't completely out of your system. It could be that the Lyrica is already taking effect, but you can't tell because the Mirapex is not completely out of your system. You said that the switchover to Lyrica was 2.5 weeks ago, right? According to what I already told you my neurologist said, Lyrica should have already started to work. But...that is without having to worry about withdrawing from something else at the same time.
I don't remember if I told you, but I started Lyrica shortly before you did. I am not having the same problems as you are because Lyrica was added to something else and not used as a substitute.
Thank you Jess I have just read Joolsg reply and I think you may both be right it took me a long time to get through the withdrawal symptoms after ropinerole but it wasn't quite so intense after mirapex so hadn't really considered that it was still messing me up. Had a reasonable night last night and feel much more positive having read everybody's advice etc Thanks again and glad your doing ok now
January 27, 2019 Operababe: Tomorrow I am going to get therapeutic yoga. I already had acupuncture but was not satisfied. I am investigating alternative treatments.
I found that it takes a couple of weeks for Pregabalin to take effect. I am also on it plus Targin 5mg and Magmin (Magnesium) 500mg X 2 times daily. I have just very slowly weaned myself off the Neupro patch which took me 6 weeks. To say that I am cured would definitely be incorrect but this combination had helped me greatly but at the slightest hint of RLS I am put of bed and either having a hot shower or exercising or at least walking around for 15 minutes. I am hoping this helps you.
Thank you I am now on 150mg and have been for 4 nights I've been taking pregablain now for almost 4 weeks but don't think it's working for me had very little sleep still up and around most nights the odd night sleep I've had i think has been down to being exhausted. On the plus side no side effects although I may have put on a a couple of sounds in weight. Not really sure what to do next.
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