What next on this awful rollercoaster

[Operabab]

Interesting to read the post just put up on Levodopa (Co-Careldopa) I have just been prescribed 1to 2 nightly12.5 mg. I argumented on ropinerole almost a year ago and have been on pregabalin but there is a good chance that this has caused me to lose my peripheral vision. I have just weened of that and am now left not knowing what to do next. I am 62 living in uk have Rls everynight and the obvious insomnia that seems to come with it even on the rare night my legs are quite i dont sleep if im lucky i average 3/4 hours a night at present. Pretty scared about where I go from here still having tests on eyes but more worrying is my lack of sleep. Have tried cutting out all the normal triggers any suggestions please.

[Hidden]

Unfortunately, since you've already augmented once, it's likely to happen again. With Levopdopa, that's much more likely to happen than it did with Ropinirole.

Since you've been off Ropinirole for a year, and Pregabalin is now a problem, it might be better to start back on another dopamine agonist rather than Levodopa. Extended release Rotigotine, Neupro patches is possibly the least likely to cause augmentation.

As regards augmentation, Levodopa is the worst.

An opiate is recommended for refractory RLS, RLS where all other treatments have failed. The difficulty is persuading a doctor to prescribe it.

A benzodiazepine e.g. Clonazepam or a "Z" drug e,g, Zopiclone might help with sleep. This is not, however, a long term solution.

You could also ask your doctor to check for any deficiencies that are associated with RLS, e.g. vitamins B12 and D and Potassium. Brain Iron Deficiency is also associated with RLS and can be assessed by a blood "Ferritin" test. A "normal" ferritin level can be quite low, but for someone with RLS it seems to be now commonly accepted that it should be at least 50 mcg/l and up to 50% of RLS sufferers can benefit from raising ferritin to at least 100mcg/L If your doctor does a ferritin test and says it’s normal, you need to know the exact number.

Magnesium deficiency can also be a problem, but a normal blood test can't easily identify it. If your blood magnesium is low, then it's fairly clear that you have a deficiency. If blood magnesium is "normal", however, it does NOT mean that you don't have a deficiency. You can have a deficiency of magnesium even if your blood level is normal. this is also true of brain iron deficiency.

If you decide to try any supplements of any of these, do not take potassium if you have any heart or kidney problem.

I'm sorry you're in this dilemma. I hope your eyes turn out to be better than you are currently thinking.

[Operabab in reply to Hidden]

Thank you for your thoughtful reply I have had my ferritin levels checked and they are 125 mg so not bad but not a magnesium test as far as I'm aware.

Still have a prescription for rotigotine 1mg / 24hr transdermal patches so prehaps I'll try that again. I was prescribed it whilst i was coming of ropinerole and it made me feel awful but i was augmenting i guess at the time and that was 11 months ago.

Nothing much to lose in trying.

Thanks again just wish dr were more clued up on what they are prescribing the worst is that this was recommendation from the neurologist.

[Joolsg]

I agree with Manerva. You have been through withdrawal from Ropinirole ( and I am sure you remember how awful augmentation was). Your doctor clearly is not knowledgeable about RLS or he would not suggest Levo dopa.

There are many people in the UK with refractory RLS who have been prescribed an opioid, so it is possible to find a doctor or neurologist who knows enough about RLS and who is willing to read the research on the safe use of low dose opioids.

However, you may find certain prescribing areas more difficult than others.

I think , in your case, opioids are a better and safer alternative to dopamine agonists. Pregabalin is clearly not suitable for you if the side effects have caused eye problems.

Read all the info from the USA on safe, low dose opioids, print off and ask your GP to read and review, but bear in mind many UK doctors ,for some weird reason, do not seem to accept US research.

mayoclinicproceedings.org/a...

[Operabab in reply to Joolsg]

Thank you so much for your helpful comments will certainly take a look and print off as you suggest its obvious we need very much to help ourselves with this illness.

Thanks again