Further Tips Please.

[davealex]

Thanks for the concern and advice in response to my first post 2 months ago.I am currently 5 weeks off the primipexol after 12 months of gradual weaning. Many people talk about experiencing the worst 3 weeks of your life after the final dose and my reactions are still extremely strong.

It is like a convulsion in slow motion which can last for several hours. If I lie down it feels like I am being kicked in the stomach and I have to double up to absorb the "kick". Thankfully it doesn't have the pain associated with kicks.

Sitiing up is also very animated and "vocal" . Standing or walking is perilous and I have to be very careful to avoid falls.

Sleep ranges from non existent to just under 3 hours but I can usually supplement it a little during the day.

Add periods of bad foot pain from peripheral neuropathy and I get extended times where I can’t sit, stand, walk or lie with any sort of comfort.

I am on 300 mg of Lyrica for the foot pain.

My question is: Is this normal and realistically, how long can it last?

[SueJohnson]

It doesn't sound normal to me. What does your doctor say?

[davealex in reply to SueJohnson]

Going to see her early this week and I am going to reassess the whole situation. Thanks for your reply.

[Joolsg]

Lyrica often doesn't help RLS after augmentation on a dopamine agonist.You clearly need to see another knowledgeable neurologist and add a low dose opioid to treat your very severe RLS.

The usual advice applies. Ensure serum ferritin is above 100ųg, preferably 200ųg and check for trigger medications.

[davealex in reply to Joolsg]

Thanks for your reply. Back to the drawing board I think.