Pacing, walking, rocking: I have had... - Restless Legs Syn...

Restless Legs Syndrome

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Pacing, walking, rocking

Tamaroy profile image
7 Replies

I have had the worst 4 days/nights for a long time, cannot sit still, cannot stand still, CANNOT lay still.

Really fed up!

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Tamaroy profile image
Tamaroy
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7 Replies
Joolsg profile image
Joolsg

I feel for you Tamaroy. You mentioned that you were on Pramipexole and Manerva advised that pramipexole causes augmentation and he also advised that you would need to reduce pramipexole very, very slowly.

What dose of prami are you taking and what other meds are you on, including OTC meds like cough medicine or anti histamines?

It does sound like augmentation so please read all the info. Tramadol helped me enormously during withdrawal from a similar drug, Ropinirole.

Tamaroy profile image
Tamaroy in reply to Joolsg

Thank you for concern, smallest dose of Prami, advised to stop it 3 days ago, as not working now on monthly trial of Gamapentin.

Joolsg profile image
Joolsg in reply to Tamaroy

Ahh- that’s why you are in such an awful state.

You are in withdrawal from pramipexole and that is hellish with constant RLS, and leg jerks and no sleep. The worst of it lasts 10-14 days after the last dose of pramipexole.

You may need meds to get you through it like an opioid. I took tramadol every 4 hours during the worst nights.

The Gabapentin takes 3 weeks to take effect but the withdrawal can last weeks.

Cannabis can also help- it will give you an hour when you are desperate.

Stay strong and let us know how you get on.

So sorry to hear, things are so bad. As Jools suggests, it really does sound like you're suffering augmentation.

Tamaroy profile image
Tamaroy in reply to

On very small dose, Doctor recommended to stop it, have now been given a trial of Gamapentin, it's a wait and see results now.

in reply to Tamaroy

It will possibly take at least several weeks for the Gabapentin to take effect and in the meantime, even though you were only on a small dose of Pramipexole, you may be having withdrawal effects.

It is significantly harder to wihdraw from a small dose of a dopamine agonist to nothing, than it is to withdraw from a very large dose, to the smallest dose.

A study published in The Open Neurology Journal, 2015, sorry only have as a pdf, can't post a link - says

"One patient was able to wean from 3.5 mg of ropinirole to 1 mg over 12 weeks

without difficulty, but experienced a drastic increase in symptoms when decreasing from 1 mg to 0.75 mg and from 0.75 mg to 0.5 mg, which took 16 weeks altogether"

Do not underestimate these withdrawal effects, this may be what's causing your current situation. Unusual, but there was recently a member of the site who stopped taking Pramipexole after only having taking 44 mcg (half a tab) and had such withdrawal effects that they started taking it again.

The withdrawals could last a couple of weeks.

I think you might have said elsewhere how much Gaba you're taking, but if it doesn't work in four weeks, a) it might be because of lingering effects of the Prami, b) It might be too small a dose.

Stick with it, don't give up after 4 weeks.

Unhappygirl profile image
Unhappygirl

My heart aches for you, lve been through augmentation, its evil, do what you've been advised, don't take any DA meds, they may help initially but then you pay the price. I had my ferritin level checked and lm now on iron which has helped me immensely, its worth having it checked out

Stay strong x

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