Nerves??: Taking Pramipexole, started... - Restless Legs Syn...

Restless Legs Syndrome

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Nerves??

Woody4 profile image
12 Replies

Taking Pramipexole, started with 1/2 mg every night 1 hour before bedtime, 4 months ago after augmenting on roprinole. Had to go to 1 mg about 2 weeks ago. And now woke up this morning to my arm going nuts. My dad had rls bad in his later years, after 60. They said nerves were to fault, rls in the 60's wasn't well known. He was given Valium and this seemed to do the trick for him. Any research on nerves being the culprit??

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Woody4
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Joolsg profile image
Joolsg

Nerves are not the culprit Woody. Pramipexole is the big bad wolf here.

You augmented on Ropinirole and your doctors should not have prescribed another Dopamine Agonist as you will augment quickly again.

Your only solution is to reduce slowly with the help of a strong painkiller.

Read the pinned post , top right , on Augmentation.

Joolsg is definitely correct. 1mg is a high dose of pramipexole and is the cause of your worsened symptoms - particularly given that you have already augmented on ropinerole. The only real option is to discontinue pramipexole (gradually) hopefully with the help of an opioid. You should get your serum ferritin checked to make sure that it is at least 75, preferably 100 (do not let them tell you you are 'normal' - make sure you get the actual figure).

Woody4 profile image
Woody4 in reply toinvoluntarydancer

If I quit taking the Pramipexole what will stop sleepless nights??

involuntarydancer profile image
involuntarydancer in reply toWoody4

That is the million dollar question. The standard treatments are (1) raise serum ferritin to above 100, (2) gabapentin/pregabalin, and/or (3) opioids such as tramadol or codeine, oxycontin (targinact is licensed for rls treatment in EU) or methadone (the rolls royce of opioids for rls but sadly not normally prescribed by anyone other than US experts).

Some lucky people find that raising iron levels and getting off the dopamine agonist (pramipexole), sometimes together with some management techniques, is sufficient to get their symptoms under control.

Woody4 profile image
Woody4

Thanks all. Afternoon after arms waking me up, around 5 pm, arm and legs started both started acting up. If this is the end of pramipexole, then it only lasted barely 4 months.

Parminter profile image
Parminter

Half a milligram? As in 0.5mg? If so, that is huge.

And pramipexole is cited by the experts as probably the worst Dopamine Agonists of all for augmentation.

Sorry to be the bearer of bad news, but I think you need to change your meds.

Hi Woody sorry to hear of your augmentation. It sounds like you've had a bad deal from your doctor. I guess you must have been prescribed Pramipexole despite augmenting on another dopamine agonist previously and to allow you to take a massive 1mg!!!!

I'm not sure what your situation is but it may be that you need to see a doctor who is more knowledgeable about RLS.

Concerning your dad. If by "nerves" you mean anxiety, although this isn't a cause of RLS, it does make the experience of RLS worse. Your dad was given Diazepam which is a benzodiazepine. These drugs can be used for RLS if it's causing insomnia. They also have a muscle relaxant effect which is bit helpful. However benzodiazepines on their own can't control RLS symptoms.

On the positive side there are alternatives to dopamine agonists, but you will need help withdrawing from the Pramipexole and it's going to take a while. It would help if you had a doctor knowledgeable about RLS. If that's not possible then you need to gain more information about what to do.

You will find this site very helpful.

Woody4 profile image
Woody4 in reply to

Sadly this Dr is supposed to be rls knowledgeable. It bothers me y'all are saying that .5 mg is huge and 1 mg is massive of Pramipexole.

nightdancer profile image
nightdancer in reply toWoody4

Considering that .125 mgs is the starting dose. 1 mg of pramipexole IS HUGE. For one thing, once one augments on any dopamine med, another dopamine med is not the answer, It will happen all over again.

in reply toWoody4

Sadly this Dr is NOT RLS knowledgeable.

nightdancer profile image
nightdancer

You are now augmenting on the pramipexole.

The RLS experts are recommending to take no more than 0.25mgs because of augmentation. so you can see why people are saying your dose of 1mg is a massive dose. I hope you can find a doctor who will help and support you in weaning down off your Pramipexole.

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