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Restless Legs Syndrome

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Sinemet and anxiety

Yakester profile image
10 Replies

I finally saw a new neurologist last Monday. I have been off pramipexole for a couple weeks. Monday I was prescribed sinemet. In the last few nights I’ve had a good night, two bad nights and then this morning woke up after some fairly good sleep but my arms were moving and i feel anxious and depressed. Could this be the sinemet already?

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Yakester profile image
Yakester
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Pam34 profile image
Pam34

Hello

I would query with your neurologist why he has prescribed you another dopamine drug when you have just come off pramipexole. I presume you came off this due to augmentation? If this is the case the absolute worst thing you can do is follow it with another drug from the dopamine family.

Pam

Joolsg profile image
Joolsg

Yes. You a augmented on pramipexole and went through hell getting off it. You’ve only been off it a few weeks so the neurologist should never have put you on another DA.

What the hell was he thinking of?

It’s time for you to take control of your own health.

You need to get off the sinemet and get on Pregabalin or an opioid.

Yakester profile image
Yakester in reply to Joolsg

I didn’t truly understand, from what doctor said, that sinemet is a dopamine agonist. We talked about a lot of drugs and I told him emphatically that I did not want to be on a DA. So I guess he thought he could prescribe a different DA. I am such a mess. I am barely functioning. I have just moved in with a wonderful man and I’m so afraid he’ll get tired of all this. So far he has been great. .

Joolsg profile image
Joolsg in reply to Yakester

Don’t worry too much as you can reduce the sinemet with the help of tramadol or OxyContin. You’re still in withdrawal from the pramipexole which can last weeks. You can taper off them once you’re through withdrawal.

Then Ask for pregabalin which is not a dopamine agonist and which works well for a lot of people. Increase the dose slowly by 25 mg every 4 days up to 150mg and take at night.

Also get your bloods taken -serum ferritin needs to be above 100. If lower take gentle iron every other night to increase levels.

Read everything you can on here and print off info on Augmentation and withdrawal.

The problem is that you’re dealing with a neurologist who doesn’t know the latest on RLS and he may be unwilling to listen to you- sadly there are a lot of ignorant and arrogant neurologists out there. Stand your ground though- he is bordering on negligence by putting you on sinemet when you’ve augmented on pramipexole and told him you didn’t want to go on another DA.

See another doctor- a GP in your surgery who is willing to listen to you.

Stay strong- you will get off the sinemet and you will get relief from an opioid while you start on Pregabalin ( Lyrica).

Let us know how it goes.

rls_optimist profile image
rls_optimist in reply to Joolsg

I'm sorry for everything you're going through. I totally agree with Jools and others here. I will just add that, not only is Sinemet another DA, it is the worst possible DA to prescribe for daily use for RLS. It leads to augmentation quickly and with much higher likelyhood than all other DAs. It can be used safely only if taken occasionally (probably no more than 1-2 times a week) for very mild forms of RLS. It sounds like you are not in that category. Good luck!

Yakester profile image
Yakester

Thanks for the reply. I need all the support I can get. Am messaging doctor right now.

Pam34 profile image
Pam34 in reply to Yakester

Hi

This is worth a read and showing to your neurologist.

sleepreviewmag.com/2015/02/...

It explains augmentation and what should be done next. Read it and understand it. You really need to read as much as you can and then work with your doctor. You need to take responsibility for your own treatment as the doctors/neurologists are not always up to date!

Good luck

Pam

Lucyjane29 profile image
Lucyjane29

Ah I feel for you I really do I me along with everybody else in this wonderful group truly understand and we’re all here to help and support you.

I personally would never want a DA drug again, I’m currently trying to get off ropinorole and going through hell.

Def go back and query it.

Keep us posted and good luck x

niabxxx profile image
niabxxx

I got off of all dopamine Agonist drugs about a month ago. I've been on them for over 20 years. I was augmenting something awful and I saw a doctor that knows what he's doing.

Now I have dispensed with all dopamine Agonist drugs and also Tramadol. Now I'm on a low dose of methadone and have not had any restless leg symptoms except occasional breakthroughs which only last for about a minute. Also for the first time in 45 years I'm sleeping. There are doctors at the Sleep Centers that know what to prescribe for you based on how bad your restless legs are and your previous history of medication. So get some professional help by going to one of the RLS Sleep Centers that are around the country because there you will get up to the date information and care. Even if you have to travel for a day like I did who cares? After 45 years of thrashing around and suffering and losing years and years of sleep I would pay any price For relief

Joolsg profile image
Joolsg

Sadly, here in the UK, methadone is not prescribed for RLS - we’re about 10 years behind the USA in RLS knowledge ( well the doctors and neurologists I mean).

We can get opioids as long as we print off all the research papers.

Targinact ( a combination of OxyContin and naloxone to counter constipation) is licensed by NICE in the UK specifically for RLS so now it’s easier to persuade GPs to prescribe it.

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