Hi there, having been on the Neupropatch (3 mg) and Clonazipam (0.5 mg) since June 2017 (and Pramiprexole since 2006 until I augmented), over the last month I have increasingly been needing to take 2 co-dydramol at night to help me sleep and actually I take it every night now, otherwise hours of RLS. I know I am augmenting again and also know I will get hooked on the Co-dydramole and need to see my Neurologist again, who might try me on Pregabalin or Gababentin.
I greatly appreciate the comments people post on this forum and It has been interesting reading about Iron in the brain as opposed to in the blood (my ferretin level is 88). I do take slow release iron tablets, magnesium and turmeric supplements and watch my triggers.
I am also interested in LDN (low dose naltrexone) and wonder whether I need to get a test for SIBO (small intestinal bacterial overgrowth) .
My question is: do I go and see a very expensive specialist in London or stick with my own neurologist here in Surrey, UK?
My other question is: do iron infusions also help increase iron in the brain?
I know one of the answers is everyone is different, but would really appreciate your suggestions. Many thanks indeed.
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Felicity21
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Hi, just to clarify, as I understand what you wrote, you were on Pramipexole from 2006 to 2017, when you suffered augmentation.
Then you switched to the Neupro patch, i.e. stopped the Pramipexole and started on the patch. Both Pramipexole and the Neupro patch (Rotigotine) are dopamine agonists (DAs) and as you had already augmented on one DA then it was no surprise that you augmented on another.
If you still use the Neupro patch and are suffering augmentation, the best way to deal with that is to wean off it. You could then start to take Gabapentin or Pregabalin instead.
Not a good idea to take co-dydamol regularly and long term, partly because of dependency problems, but also because it may not be potent enough to deal with the RLS and partly because it also contains paracetamol.
Some people take an opiate, (not co- dydamol) whilst weaning off a DA and some people take an opiate long term for RLS, but it's prescribed!
In answer to your question, do you see your own neurologist in Surrey or a very expensive in London, I can't answer. I don't know any neurologists in Surrey or London. It's pros and cons. I guess your "own" neurologist is an NHS one and unless you see them on a regular on going basis, you may have to wait months before you get an appointment. Then when you do, they may or may not be very knowledgeable about RLS.
If you can afford a very expensive one in London, you need to make very sure that they specialise in RLS, otherwise they may be no better or even worse off than your own neurologist, or even your GP.
My GP was quite happy to switch me from Pramipexole to Gabapentin, but wasn't willing to prescribe an opiate, without advice from a neurologist.
• in reply to
Dear Minerva. Thank you so much for getting back to me. Much appreciated. I have made my appointment (private) with the London RLS specialist. I realise I can’t take the co-dydramol long term but it is actually really helping me particularly as I now take it after supper in the evening (rather than if and when I get restless in the night and being awake hours before it works) and it really gives me a good night sleep. I also take Senocot as a laxative. Hopefully the specialist will put me on to Gababentin or Pragabalin and give me advice on how to switch.
• in reply to
Great that the co-dydamol is working for now. It is better to take it before you try to sleep, I've always found that if I don't take something until after an RLS episode starts, then it doesn't work.
You can start taking Gabapentin or Pregabalin before you stop tge Neupro, but you must wean off any DA slowly as withdrawal effects can be severe. That's where an opiate (temporarily) will help.
IV iron certainly will increase brain-iron, although it takes up to three months for the iron to get where you need it. A ferritin level of 88 may not get help, although there was one patient on this site who was given infusions when his ferritin was over 100. Will your doctor consider IV Iron? (Those who report on big improvements after infusion have always shot up to 350 or thereabouts).
IV Iron is not a cure-all except for a few, but it can improve your condition greatly if your brain-iron is low.
You need to get off dopamine agonists and switch over to gabapentin and possibly an opioid to help you through. So long as you are on a dopamine agonist this will keep happening., and getting worse.
Dopamine agonists are no longer considered first-line treatments by the RLS top-docs because problems are almost inevitable, at least 70% inevitable. (I think, when they can test over 20 years, they will find it absolutely inevitable).
Withdrawal may be easy or hard, but not doing it will be worse, and you need support to do it.
That's great and as long as that works for you. I don't want to put a damper on that, but realistically it may be that after some time it stops working. Doctors (in the UK at least according to national guidelines) are supposed to make people aware that problems can arise from longer term use of Dopamine Agonists (DAs). These being loss of efficacy, Impulse Control Disorders and augmentation. The higher the dose, the more likely these are.
In view of this although it's fine to continue as you are currently doing, however, if your medications stop working, do not be tempted to increase the dose(s).
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