Scared

[Repunzel1972]

Coming off pramipexole.

Not sure why just after midnight is my worst time. I’m coming off pramipexole but having some weird symptoms. I’ve got this weird pain my side. Sometimes it’s in my tummy. Sometimes under my ribs. It’s worse when I move.

I took 3 gabapentin today. No pramipexole. Not good. Two codeines to cope. Went to sleep, had waking dream that I was trapped in my duvet and by my hair and couldn’t get out. Im also getting this fear that if I fall asleep Im not going to wake up. This is crazy as although I have obstructive sleep apnea I have CPAP.

On top of all this my rls is back so sleep is impossible anyway.

Can’t believe gp’s are prescribing this awful drug (pramipexole). It’s poison.

[LotteM]

Hi repuzel, this doesn't sound good. I hope it will prove to be transient, as stopping the pramipexole will cause withdrawal. Did you stop suddenly(not good)? Or reduce slowly (recommended)? And when did you start the gabapentin? It takes usually 3-4 weeks to become fully effective. Also, finding the right dose and timing is difficult if not impossible as long as withdrawal symptoms (=increased rls symptoms) are still present. And how much gabapentin do you take and when? Usually rls symptoms are mainly in the evening/ at night, thus the standard dosing of 3x daily is not as effective for people with rls. People on this forum that take gabapentin for their rls (I don't ) take it some 2-3h before bedtime. At higher doses they find it more effective to split the dose; it enhances absorption.

[Joolsg]

Hi Rapunzel. What dose of Pramipexole were you taking and for how long? You must never stop Pramipexole suddenly as it's extremely dangerous. It has to be reduced very, very slowly over a minimum of 3 months.As Lotte advises, gabapentin to replace Pramipexole should be started 3-4 weeks before the last scheduled dose of Pramipexole and it's best taken in the evening for RLS.

If you stopped Pramipexole suddenly, start taking it again and then start to reduce extremely slowly.

[RLSofManyYears in reply to Joolsg]

Hi, Sorry to hear how things are with you. I too have been on both Ropinirole and Pramipexole and the key, as mentioned, is to reduce slowly. NEVER suddenly stop as that can be dangerous. Slow but sure is best. It will mean more sleepless nights unfortunately and so other options can be considered in conjunction with your GP.I hope you get things settled.

[Runedrun26 in reply to RLSofManyYears]

Do you know of a good foot cream to use I use icy hot it helps maybe someone can suggest something else.