Firstly, credit to InvoluntaryDancer who used this term in a post today and I have plagarised it for my post as it perfectly fits with my latest appointment with my sleep consultant.
So I augmented on Neupro after a month. I now know what augmentation of PLMS is - basically you get RLS during the day but without the urge to move because your legs move themselves to counteract the numbness/tingling/painful sensations. And then your arms join in the dance.
Ropinirole had kept me awake all night so I hadn't really wanted to go on to Neupro but deferred to my consultant. I have also been on Pregabalin (no benefits and horrid side effects), had an iron infusion, Codeine and Melatonin. All with no benefit. Luckily my consultant hates Pramipexole so I was at least spared that.
My consultant's view today was my ONLY remaining option was Gabapentin. She has no interest in combining meds. Of course Gabapentin isn't the only remaining option and, as I am fearful of Gabapentin because of my Pregabalin experience and because of the risk of it worsening my depression, I asked her about Targinact (oxycodone and naloxone). This is one of the very few meds in the UK which are licensed for RLS, yet my consultant had never used it, had to google it and told me the hospital pharmacy probably wouldn't fill the prescription (of course they did because they probably DO know it is licensed for RLS). She then tried to convince me it wouldn't work because it was the same as codeine - if so, why is Targinact a controlled drug and codeine is available over the counter?! Oxycodone is stronger, slow release and metabolised differently to codeine which may make a difference as to whether it works for individuals when codeine doesn't.
I really am quite shocked by the lack of knowledge but also worried about what happens if the Targinact doesn't work. The consultant left me with the clear impression that I only had one further option (gabapentin) and after that I would just have to live with PLMS and the devastating effect it's having on my life.
Apologies as this has turned into a rant, whereas my purpose in posting was to show empathy with those very many of us who are not getting the advice and support we need from the medical profession.
Thanks for reading....if you still are....if this has sent anyone to sleep then that would be a great result!