Restless Legs Syndrome
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RLS, Pramipexole & Vine Extract

Hi!

I’m new here & glad to have found fellow RLS sufferers. I’ve been taking pramipexole for a few years now. I take 0.088mg x3 tabs a night each evening.

I also take amitrytline & topriomate for migraine.

I’m having a real flare up of RLS that’s affecting my arms too. I’m not sleeping at all well either.

I phoned the pharmacist to ask about timing of taking pramipexole. She suggested taking it later. I usually take it about 7pm as my legs are really jumpy from early evening.

We’ve just moved house & she said stress aggravates RLS.

I asked her if she knew of any supplements & she mentioned ‘vine extract’

Has anyone tried it?

Any suggestions on timings for taking the pramipexole?

Thanks in advance

Sally

15 Replies
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If she had any knowledge of rls medications , she would have told you that aamitryptoline is an extremely powerful antagonist for rls. ( for most sufferers )

Get a safe alternative asap.

Check out list of medications to avoid on

rls-uk.org

Print it out and show it to your pharmacist and doctors.

Good luck.

Know nothing about vine drinks.

Your dose of prami is at the high end- but is not your immediate concern.

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Hi sallysews

I’ve been taking 0.088mg pramipexol 4 times a day for several years now and like you I have restless arms and legs

I start taking my pramipexol at lunchtime, I take one at lunch, then one every three hours until 9pm. My dr advised not to take them all together but to spread them through the day, he also said to try to manage the timing myself to suit me. It took a few weeks but I find it works for me.

Perhaps you should have a chat with your dr to see if this might work for you too

Good luck👍🏻

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Your dose of Prami is too high- timing won't help.

You have augmentation - search for that on this site.

Taper off the Prami very slowly and find a proper dr.

Good luck.

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Thank you for the advice, I was unaware of this and I’m shocked. I will see a dr ASAP . Again thank you

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Hi Pammynorman,

Just to confirm that madlegs is absolutely correct.

You should do a lot of research about augmentation before returning to your doctor. Many doctors have never heard of it and can inadvertently do a lot of harm to their patients in consequence. It is very well recognized by those specializing in Rls.

Check out the johnshopkins hospital website - rls section. Also rlshelp.org run by Dr. Mark Buchfuhrer. These are world leaders in RLS treatment. It is worth knowing what they are saying before returning to your own doctor.

You are, unfortunately, in for a rough few weeks if you are to get off pramiprxole but it really is worth it. Symptoms improve - often returning to pre-pramipexole levels and you can then look for more optimal treatments. Make sure your serum ferritin levels are high before you start. As you will see US experts recommend serum ferritin of over 100.

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Thank you so much 🤕

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Very helpful Reply. Thank u

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Hi sallysews,

As Madlegs says, Amitryptiline is a real problem for RLS. If taking it for depression, switch to Trazodone. If taking it for nerve pain, switch to pregabalin.

Once off Amitryptiline, if the RLS doesn't settle down, look at the post by Pippins tonight. It could be Augmentation.

jools

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Thank you for replying and concerns.

As I mentioned, I take amitpryline for migraine. Under the GP’s guidance, I did try to reduce it but it made my RLS worse. I talked to her about it & she said it affected patients differently, some were affected badly by amitpryline others it helped. I am in the 2nd group.

I am not worried about the amitpryline.

My question is really about timings of taking the pramipexole and if anyone had tried red vine extract. They are suppliments for circulation and have been reported to help with RLS as in the nursing times.

nursingtimes.net/clinical-s...

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I had been taking ,25 mg of pramipexole x 2. It was no longer working. The doctor upped it to .75 mg x1.

I must take it in the afternoon to feel the effects overnight.

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Please check out

" Augmentation "

For your own sake.

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Thanks rshagen, it’s a difficult road we all travel and everyone’s journey is different. Hope it’s working well for you

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I have a terrible time with insomnia using pramipexole .25 mg. Have to use a big benzo just to get a few hours sleep. Am hoping for something different when I see the neurologist next week. Maybe an Alpha2delta. Would try marijuana if I could find it -- illegal in this state. Getting deperate.

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I had severe migraines and cluster headaches for years. Started taking magnesium maleate and and within 3 days I never had them again. It’s been about 3 years now since I last had one.

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Hi Mum007,

Thanks for sharing about the magnesium maleate. I also take magnesium and have found a vast improvement in the reduction of daily headaches & migraines. I worked quickly for me too 😊

Stay well, Sally

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