Nothing works

[Memmy]

I'm taking 300mgs pregabalin. I've tried even more but it doesn't work. Even with tramadol 50mgs it does nothing.I can be walking around until 3.30 to 5.30. I've taken tonight my 300 pregabalin and 2 OTC ibobrufen and codeine. I've just taken 15 mgs codeine and a teaspoon of Kratom. I'm still rubbing my legs hoping that it will eventually stop. Now it's a black coffee. It's a living hell. Here they won't give me methadone. My codeine is from the UK. I save it for desperate times. Still not working. I don't want to take a bigger dose or I'll end up not waking up. I've tried most things and I'm considering going back to mirapexin. It worked well for many years. I stopped taking it months ago and I only took 0.09mgs. Would I augment quickly if I go back to it.. Any advice although I know most of you will frown at the idea.

[SueJohnson]

Please don't go back on mirapexin. You can go as high as 600 mg on pregabalin.

[Memmy in reply to SueJohnson]

Hi Sue, I tried more and I was like a zombie. I felt drunk all the time. I don't think more will work

[SueJohnson in reply to Memmy]

Understood. What was your ferritin?

[Memmy in reply to SueJohnson]

Ferritin is well over 100

[Amrob]

Memmy that sounds awful. So sorry to hear you're in this position.

I completely understand you not wanting to increase the pregabalin dose. The side effects of 300mg are more than enough to deal with.

I'm sure you've considered everything already but is there perhaps something triggering your RLS to make it so bad?

I've heard of some people who have augmented on pramipexole and then having went off it, re-introduced it at a small dose and take in addition to their regular meds.

So you could try staying on pregabalin but introducing a very small dose of pramipexole and see how you go with it.

I augmented on pramipexole after 6 - 12 months. I tried it again several years later but unfortunately i augmented quite rapidly and so had to come off it. Luckily i don't seem to have an issue coming off pramipexole.

I'm not sure if you've tried buprenorphine ( i realise you have very limited options where you reside) but is there perhaps any possibility of sourcing it from another country? Or perhaps oxycodone?

I believe it was Jools who posted recently about a dopamine agonist in development that won't cause augmentation. Even though that may be a couple of years away, take heart that there will be better options in the future.

[Memmy in reply to Amrob]

Thank you. Let's hope

[Hages]

I feel your pain I’m on 300 pregabalin and 50 of tramadol and the same as you it’s not working last change was clonazopan but that made me a zombie next day and as a sparky I can have that . Like you I’ve been through the usual suspects of drugs.

I may have managed to get a neurologist appointment just waiting for it to come through but the waits are long !!

[Memmy in reply to Hages]

It's awful. I wish something could be found

[SueJohnson in reply to Hages]

Have you had your ferritin checked?

[Memmy in reply to SueJohnson]

Yes I have. It's always good

[Hages in reply to SueJohnson]

Yep all good apparently

[SueJohnson in reply to Hages]

When you say all good, was it over 100? As what is normal for others is not normal for people with RLS, so doctors will say it is good when it isn't.

[Memmy in reply to SueJohnson]

Yes it was well over 100

[Hages in reply to SueJohnson]

Yes over 100 can’t remember exactly

[Jumpey]

I am so sorry you are suffering. Have you checked your ferritin and are you on any other meds that may be worsening your RLS? You could try a stronger opiod.I couldn't tolerate Gabapentin or Pregabalin either.I'm now on Morphine and it works well.Huge good luck.x

[Memmy in reply to Jumpey]

Glad it works for you

[Memmy in reply to Jumpey]

My ferritin is well over 100