It's 4am I haven't slept a wink. I've had my worst night for a long time. I've just stopped taking my Pramipexole and I've been on Gabapentin for three weeks but as long with my legs jerking my body too is jerking . I don't know if it's the reaction to stopping the Pramipexole or my body is reacting to the Gabapentin!
I don't really want to go back to my GP because I think they have got fed up with me!
But I can't have another night like this it's awful. I've tried taking codeine to no avail, massage and walking up and down but I'm at my wits end I thought I was making progress by coming off the pramipexole but I'm worse now as when I was suffering augmentation! Not sure what or which way to go next!
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Hoochybaby
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From many posts written on this site this is not unusual when you stop taking pramipexole.
The gabapentin should start working soon, but if you're not taking an effective dose, you will need to ask your doctor to increase it.
I'm afraid that sometimes doctors do seem to get "fed up" with you, but if you have a genuine condition, which you have, and the medication you're prescribed is not working, then you have the right to keep going back.
If it were an infection you had and the prescribed antibiotic wasn't working then you would go back and really they can't criticise you for that.
I'd say you probably need to be taking at least 900mg of gabapentin for it to be effective and you could try taking 300 mg midday plus 600mg at night. Then if you're still struggling, just take one dose of 900mg at night.
If you're currently on less than 900mg then, as your doctor should know, you need to increase the dose in steps of 100mg every 2 days.
Also if you move doses from one time to another, say midday to night, then you ought to do that in 100mg steps as well, i.e. reduce the midday dose by 100mg and increase the night dose 100mg.
Some people take up to 1200mg of gabapentin or more.
If your doctor isn't familiar with prescribing gabapentin for RLS then there's a couple of things you could show them.
One is the national guidance on prescribing gabapentin which does say what doses can be used.
The other is some detailed guidance published by some RLS experts.
Note that gabapentin is not licensed for RLS. Do note also that up to 1600 mg can be taken at one time. Daily maximum is 3600mg. So a daiky dose of 900 mg is not too much.
As you can see you're not the only one awake at this time.
However, I woke about 3.50 after sleeping from about 11pm and I have no RLS symptoms. I've always had abnormal sleep patterns from being a child, especially in long dark nights. Typically I'll probably fall asleep again about 6 am and if undisturbed could sleep to 10 or 11. When I was on pramipexole I'd probably fall asleep about midnight and would be lucky if I didn't wake before 3, then that would be it.
So sorry that you are having such a hard time. Maybe Gabapentin isn't right for you. I couldn't tolerate it and it seems many people can't. Please go back to your doctor. That is what s/he is there for!
It's worth giving gabapentin a good try before giving up on it. A dose of less than 900mg and only taken for 3 weeks is not giving it any chance to work. Many initial side effects also subside after a few weeks.
Not everybody can tolerate gabapentin certainly, but it just depends what's more "tolerable", some uncomfortable side effects or severe RLS.
Since there's not many effective medications around for RLS , and none are without consequences, avoiding gabapentin yet further cuts down the options.
Obviously if someones been taking it for say two months at doses of over 900-1200mg and it hasn't worked OR side effects are worse than RLS then that's a good time to call it a day.
If gabapentin doesn't work for someone, it would be good to know what an alternative would be.
hi Did the primipexole stop / not work? I find you need to take it at least an hour before bed for best results , I had it increased after about 9 years to slightly higher dose. Gabepentin wasn’t any good for me. I have also added in a magnesium capsule 2x200mg per night this seems to be helping?
When I switched from pram to gabapentin (which was THE WORST) I took Ambien to help me sleep. Ambien sucks but not nearly as bad as weening off of pram. I still have rough nights (like last night) but generally I can find five or six hours of sleep.
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I'm suffering badly with Pramipexole withdrawal despite help with Temgesic. Any advice please.
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