Another bad night with RL. I've been up and down for four hours and it looks like being a long night!
I saw the doctor today and he was really positive about removing the pramipexole and agreed that it could be augmentation which have made my symptoms worse! I will decrease the p..ole and have the reboxetine (Edronax) waiting and can start that when the p...ole is out of my system. He said that not everyone suffers withdrawal symptoms from p.ole and sounded positive that I would be able to reduce without drama. Lets hope so.
I don't know why I'm up... why my legs are bad. I'm thinking of starting a food diary so I can go back and check what I've eaten in the previous 24/48 hours. Meanwhile I count the minutes until legs settle enough to go back to bed.
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restlessstoz
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Hi. So sorry you’re having a bad night again. Don’t give in. Try the stretchings, strong distractions, maybe magnesiumoil if available, etc. You’ve seen the suggestions on here, I suppose.
Just one question: why are you prescribed rebotexine? What is the rationale behind it? It says online it is a SSRI antidepressant and these are notorious for their exacebating effects on RLS symptoms. So think twice and do your research. There is a rather complete list of these and other meds and their effects on rls-help.org on the treatment page. You may have to go nack to your doctor and discuss more valid alternatives, such as painkillers (at least during but also after withdrawal) and gabapentin or pregabalin after withdrawal. Good luck.
Hi LotteM, I'm already taking quite large doses of Tramadol and have taken Gabapentin for about 10 years. The rational behind the reboxetine: it's an NRI and I've not been on one for RL. As an antidepressant it's not much good but there is good evidence that it has a positive effect on RL. I don't even know if I will need to use it- perhaps going of the pramipexole will make a difference. Let's hope so.
I'm surprised your doctor said that not all suffer badly from pramipexole withdrawal. From everything I've read on this forum and from my own experience of withdrawal from Recuip (another DA) withdrawal can be ghastly. It certainly was not pretty and something I hope to never experience again. Just goes to prove our point that doctors just do not know enough about augmentation and the horrid details of withdrawing from those first line of defense Dopamine Antagonist drugs they so readily prescribe.
I think what he was saying is that in his experience a lot of people go off pramipexole without much drama. They would be at the lower end of the 'experience ladder'. It's those who have severe problems who find forums like this to share their experience and look for help. Therefore, those who have experienced a horror withdrawal, would be at the top of the 'experience ladder'. I hope he's right as I don't want to go through hell however, I wonder if there's a correlation between the severity of symptoms and the severity of withdrawal from pramipexole? I'm new to this forum so can't really hypothesise who's right or if both are but I can see his logic though whether it's right or not I don't know. For me, time will tell whether I'm in one group or the other.
It was a relief that he was open to the idea of augmentation and seemed happy to let me follow the plan I'd made.
I'm also trying for the umpteenth time to reduce the paroxetine I'm on. I've been on it for about 20 years following a nightmare time following my exit from a violent marriage to a sociopath. Having tried most other antidepressants including the older ones, over the previous 7 years with one psychiatrist, as well as numerous hospital admissions and ECT it was a relief to have a doctor who prescribed the paroxetine and left it at that one- with strong psych support and a wonderful psychiatric social worker. Understandably, my GP is reluctant, as am I to withdraw from this as the nightmare time ended up taking at least 15 years of my life and I've only been 'out the other side' for the last 12 years and still noticing improvements in my life experience. (That's apart from the RL side!)
It's again, one of the hardest ones to withdraw from and as I said I've tried several times. I know that it is considered a no-no when it comes to RL but as you can see, it was very necessary at the time. I will continue to try to withdraw but usually end up going back to the normal dose as I become very emotional and cannot maintain my normal life (which is very stressful with a 'child' with an eating disorder and severe OCD and other family problems) and work, in that state.
Sorry this post is so long. it seems that once I start, it's not a quick thing to talk about!
Everyone is so different; I hope that your withdrawal won't be bad. I consider myself to have been one of the luckier ones with the withdrawal since, although my augmentation period was Hell on Earth, once the withdrawal began, I was able to get off quite quickly. As for your hypothesis, I think with everyone being so different it's hard to find any correlation.
I wish you good luck and high hopes that this period will be as short as possible for you. I never thought I'd be around to say this, but there is light at the end of the tunnel. It might not seem like it when in the depths of Hell and despair, but there is. My Hell started and ended out of nowhere; hopefully yours will end out of nowhere as well.
I was on lowest dose pramipexole for over 18 months and stopped it 4 weeks ago (did it in a couple of weeks, would take a bit longer if I did it again!)
Now on no meds but I’m now religiously taking iron . Had quite a reasonable night last night, couple of wake ups but felt promising!
I am so hoping your withdrawal goes smoothly. This disorder has already played enough havoc with our lives . It is a bit tough but so is augmentation so maybe your transition won’t be so bad. Good luck to you
Thank you. I've been up and down all night, not with legs but with alertness due to extra Tramadol last night because of legs. It solved the RL problem but caused wakefulness- I was up every hour if not every 45 minutes. At least I could go back to bed and lay down, a real positive.
I'm glad to hear you are working with a GP who has some understanding of the condition. His decision to prescribe reboxetine appears to be quite reasonable. It is one of the few antidepressants that does not aggravate RLS, and can eve help in the short term. As John Winkelman, one of the major RLS experts, has written:
"It is important to note that RLS has not been found to be a treatment-emergent adverse effect of non-serotonergic antidepressants, such as the selective norepinephrine-reuptake inhibitor reboxetine and the norepinephrine-dopamine-reuptake inhibitor bupropion, that may improve RLS symptoms in the short term."
Importantly, he also reports that 2 to 10 % of people taking SSRIs developed "treatment-emergent" RLS. Meaning the SSRI actually caused RLS in those cases. This may have been the reason you developed RLS in the first place. So it would seem that getting off your SSRI and replacing it with the more neutral reboxetine (if possible) would be a good thing to try, and may really help your RLS.
As others here have said, it seems likely that you will have a tough time coming off pramipexole, especially if you've been taking it for 10 years. You will likely need a stronger opioid than tramadol for the duration, which could be 2-4 weeks at least, such as oxycodone or better, the extended release versions OxyContin or tamoxifen. Good luck!
Thanks for the advice about opioids. I will keep that in mind.
I wonder what they mean by 'the short term' and how long a positive effect will last?
I was amazed at how I handled the GP appointment. Having read so much form the forum and research, I was able to be really confident and 'informed' and assertive. It was wonderful. Thanks everyone for your wisdom and support.
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Need help again!!
Why. Why.why.why i think im going mad!!!!
What is going on ?
I'm new here. Where to go from here?
