Once upon a time....::

[bellalurcher]

Once us a time there was a fair(ish) maiden (middle aged woman) whose legs had been bewitched. This meant that every night her legs twitched and jangled so much that she could not get any sleep.

She traveled the land searching for a cure but to no avail.

Many healers gave her lotions and potions but nothing worked. Indeed some of them actually made things worse. Then, one day, she was lucky enough to see her fairy godmother (nurse practitioner) who said that this couldn’t go on any longer and made her an appointment to see the grand wizard (the head of department ) himself (think Dumbledore).!

The day finally arrived and she went along praying for a cure.

But when she got there there was no sign of the grand wizard and she was heartily disappointed. Apparently he had been call away to an emergency.

So she had to see one of his minions who was very nice but she really needed to see the grand wizard himself.

Thankfully her fairy godmother came and asked if I minded her sitting in.

She was able to tell the minion just how desperate the maiden was to get some rest and after a while the minion then went to consult the Oracle who had finally made it back to the department.

He gave her some magic beans (co-careldopa 12.5mg/50mg and co-beneldopa 25mg/100mg modified release) and told her to take them before bedtime each night.

The first two nights were amazing - over six hours sleep each and the maiden started to feel almost normal for the first time in a long time but then the third night somehow her legs became bewitched again and sleep left her. Night after night she fell back into the sleepless haze she thought had left her forever.

Since then she has had one night of 4 hours sleep but now she has returned to the zombie-like existence like before.

Seems the beans weren’t magic after all 🧟‍♀️

[Arkangel]

Fair maiden, be warned - the beans seldom bring all that they promise and the dragon is always lurking, just out of sight.

[Hidden]

OOps, I think you've encountered the wicked wizard of the west.

The worst ever drugs to be taken for augmentation are any form of L dopa

I'm so sorry, it may be that they might begin to work again, but augmentation woukd appear to be almost inevitable. It is in fact because of this that dopamine agonists are now recommended for longer term treatment of RLS NOT L Dopa.

I see you have already experienced augmentation with rotigotine AND binge eating.

I also recall you said you had tried gabapentin and pregabalin, but I have no idea how long a try you gave them and at what dose.

The usual course after first line treatments have failed, which they clearly have, is an opiate. Targinact is iicensed for referactory RLS. Getting anyone to prescribe it may be a problem however. Tramadol was apparently not potent enough.

In the meantime, have you had your ferritin level checked and have you stopped the amitriptyline?

If there are any other medications you're taking they could be exacerbating your RLS

[Hidden]

I bid you hello, poor fair(ish) maiden

“Said” magic beans were not to be trusted

To sleeplessness once again you are bidden

To high heaven your legs will be thrusted

The Wizards and beans have failed you

But the forum indeed will give rescue!

I know, I know, I am no poet, but it’s the best I can do with my lack of “little grey cells” in my little tired head.

👱‍♀️

[bellalurcher in reply to Hidden]

I wait with baited breath for my legs to be thrust to the sky!

[sweetiepye in reply to Hidden]

You are forgiven !

[Madolegs]

like the fairy story at least we still have a sense of humour