JoeR. Coming of Pramipexole, RLS, going on Gabapentin Noumed and passing out when I am standing.

[JoeR]

What's happening and why. I have had RLS for 40 years and was on Pramipexole 0.52 prolonged-release tablets and 60mg codeine at night which has stopped working. I am now on Gabapentin Noumed 3x300mg. It is my first week but its horrific because at night when I am walking around the house because of the pain in my legs and arms I keep passing out and finding myself on the floor. I have banged myself all over and tonight have hit my head and face very badly. I am scared at night now. I am 73 and don't know what to do and do I keep on the Gabapentin or try to go on Buprenorphine. Are my problems augmentation or Gabapentin, I have also stopped taking the codeine. Please give me some guidance if anyone can. Thank You. JoeR

[Madlegs1]

Joe-- I'm so sorry to hear about your situation. If this was doctor led, then they should be reported, - it is criminal how you have been treated.

If you have stopped taking the high dose of Pramipexol without titrating down incrementally over about 8 weeks at least, then you will be suffering the most incredible withdrawals imaginable-- as you are describing.

Worse than coming off heroin.

Keep with the Gabapentin for present.

Go back on the Pramipexol at about the 3/4 + dose rate. It comes in 0.088 tablets- so 5 tablets should give you back some relief. After about a week, go down to 4 tablets.

Your body won't like it, but it will pay off in the end. Elfindoe has a formula for coming of Prami, which I'm sure is in some recent answers.

I would also keep with the codeine until you have matters in hand again.

If you can get hold of Buprenorphin legally, then it may well be worth trying, but I'd be inclined to get yourself of the Prami first.

However, it may be that he Buprenorphin would cut out all the above advice instantly.

There is a good post started by Shumbah on this site, which may give you guidance.

Another avenue is to email Dr Buchfurer on this site

rlshelp.org

Little yellow icon on left of first page.

He is a world expert on rls, and answers very promptly.

Good luck, Joe.

Keep in touch.

[Joolsg]

Joe, did you stop the Pramipexole suddenly or did you slowly reduce it over months? Gabapentin should be taken only at night for RLS and it takes at least 3 weeks to become effective. Call your GP surgery now or 111 and explain that you're suffering extreme withdrawal symptoms from dopaminergic drugs.

As Madlegs advises, go back on your dose of Pramipexole and then ask the GP to prescribe the lowest dose of pill ( but at the full prescription) and then start to reduce very, very slowly.

Elffindoe has advised this way to slowly reduce. Getting off Pramipexole is very dangerous but GPS don't know this as they aren't taught about RLS or dopamine agonists or Augmentation of symptom and how to safely get patients off these drugs. The experts in the US have more experience and recommend an absolute minimum of 3 months to get off Pramipexole. If you've been on high dose for over 5 years, they recommend longer.

They also advise taking a low dose opioid to reduce the withdrawal, so have a long chat with your GP and ask them to look at the RLS UK website, the NHS and NICE guidelines on RLS.

Many of us have been in your position and have managed to get off these horrible drugs.

A recent poster to this forum suggested attending a drug addiction clinic for help getting off these drugs and it's a brilliant suggestion. Getting off Pramipexole is more difficult than getting off heroin or crystal meth as your dopamine receptors are so over excited and possibly damaged. Ask your GP for the local drug addiction clinic help details.

Text

[Elffindoe]

I fully concur with both what Madlegs and Jools say.

I can add that if you're doctor advised stopping pramipexole suddenly, this DANGEROUS with a risk of Neuroleptic Malignant Syndrome, potentially fatal. You may wish to report them to authorities.

No wonder the pain if you've also stopped codeine, which also has withdrawal effects.

Jools has posted a picture, I don't know how she does that, I can't find out how!

To add more detail.

If you start taking pramipexole again and codeine, get up to where the pains go. It's not easy to reduce using extended release tablets and possibly not a good idea. Maybe not safe to cut them.

You need some 0.125mg tabs (which may also be known as 0.088mg or 88ug). All the same!

You can then reduce the dose in steps of half a tab (44ug), but no more. Stay on the same dose for at least 2 weeks, before reducing again. Codeine can help with withdrawals, but if still bad reduce by 22ug, 1/4 tab.

If despite this you still have pains, then consult a Dr again.

You may wish to change Drs.

[Madlegs1 in reply to Elffindoe]

Elfindoe- what do you think of Joe getting Buprenorphin and starting it straight away. It might be a short cut and bypass the Pramipexol downtaper altogether?I know nothing about Buprenorphin, so it may be a nonrunner?

Interested in your views!

[Elffindoe in reply to Madlegs1]

I don't honestly know.

It sounds so extreme the passing out and pains.

I think Jools was right to suggest Joe getting immediate help from GP or 111 service.

The usual opioid for withdrawals is a low potency opioid, but that requires a high not low dose. Buprenorphine, however is a high potency opioid and maybe they're less likely to prescribe it.

I'm worried Joe may be triggered into DAWS. The only way to deal with that is to start the DA again.

I think it may help to start the bupre now, but whether that will, on it's own, immediately deal with the pain and dangerous loss of consciousness, I simply can't say.

Hopefully Joe does contact GP/111 and gets immediate help.

[Memmy]

So sorry to hear. Thank goodness you are being given the best advice here

[Wairahi]

The passing out can be due to the Gabapentin. Although dramatic, that is kind of normal for Gabapentin. So if you need to move around because of the pain in your arms and legs, then I would suggest crawling on hands and knees so that if you do pass out you do less damage to yourself (and the furniture 😄).

(Other people have made suggestions as to the cause of the pain itself. I have no thoughts to offer about that, other than that as far as I know it is not a known side-effect of Gabapentin.)

[SueJohnson in reply to Wairahi]

I have never heard of gabapentin causing passing out. Dizziness yes. Unsteadiness on your feet yes. But passing out No. What is your source for this?

[89874438863 in reply to SueJohnson]

Здравствуйте СьюДжонсон

[89874438863 in reply to 89874438863]

Можно вам задатьь вопрос?

[SueJohnson in reply to 89874438863]

My goodness. A reply from 2 years ago !!!

Needless to say I can't read whatever language this is. Please translate.

[Madlegs1 in reply to SueJohnson]

First one says " Hello Sue Johnson"

Second one is " can I ask you a question?"

[SueJohnson in reply to Madlegs1]

And wow - you are also seeing this from 2 years ago. (just curious - how?) I actually was able to translate it but s/he needs to learn to post in English.

[Madlegs1 in reply to SueJohnson]

Probably because I had "saved" or "liked" the original post.

That way, I get any replies to the thread ,even years later.

However, one can get cursed with continuous notifications, if the post proves popular. And HU doesn't seem to take any notice of "unlike" button!

There was an odd post recently about being 30 minutes early etc. I am now being PM 'd by the original poster for no apparent purpose. Just a little bit creepy.

Keep up with your good work.

Do you ever sleep?😅

[SueJohnson in reply to Madlegs1]

That explains it. I have liked a lot of replies but never an original post.

[Kaarina Administrator in reply to Madlegs1]

If you re-click on the Saved button on the original posting you will not receive any further notifications that there has been a reply to that thread.

[Madlegs1 in reply to Kaarina]

Thanks, Kaarina. I actually did that- hence my comment.

However, I'll try again.

Like Sue -- do you never sleep? 😅

[Kaarina Administrator in reply to SueJohnson]

Member 89874438863 does not need to learn to post in English. Could you post in Russian? It is not against HU guidelines to post in a foreign language.

[Madlegs1 in reply to Kaarina]

I accept your point ,Kaarina,

But - for the posters sake - this site ,in general,is in the English language, and if a poster requires a response from a wide audience - which is the whole point of this set up, then they would really need to post in English.

🤔

[Kaarina Administrator in reply to Madlegs1]

Many years ago, the HU site was rebuilt so that it can selectably function in either English, Spanish or Portuguese.

I was surprised to learn from another admin that there are more people in the world who speak Spanish than English! Now you know too! 😂

[SueJohnson in reply to Kaarina]

Is it OK to say "please translate" or "it would be helpful if you post in English?"

[Kaarina Administrator in reply to SueJohnson]

I feel it is more polite to say "it would be helpful if you could post in English please?"

If I see postings from this member I edit their posting and add the translation in English using DeepL Translate.

If the member does not translate their posting and I have missed it you can always use DeepL Translate if you would like to know what they have said. Perhaps they can read English easier than write it.....

[SueJohnson in reply to Kaarina]

OK

[SueJohnson in reply to 89874438863]

yes

[Madlegs1 in reply to SueJohnson]

"Da"

[Lilcatfeet]

My personal experience with both Lyrica and Gabapentin is that I will suddenly and without warning fall asleep. Had I not been sitting when this happened I would have been on the floor as well.:I don’t bthink it’s a common side effect but it certainly happened to me. It’s why I can’t take it and got stuck in this awful DA cycle. Im so sorry for your situation…