RLS tips and info

[CAW20rlsSINCR]

I have been treated for 20 years with Sinemet CR 200/50mgs I was studies by the Canadian Sleep Institute in Calgary Alberta Canada and had severe sleep problems b/c of RLS. They put me on Sinemet CR (controlled release) and it saved my life, literally! I am concerned b/c I only have 3 more doses left before it will no longer be obtainable for at least another year till about July 2020. There is a world shortage right now.This medication is usually for Parkinson's patients, but it has done wonders for me. I will literally go crazy without it! I was hoping that I could maybe obtain any kind of Sinemet for help over the next year. I take at night before bedtime and if on ong tris in car of in airport and crowded planes. I have been so grateful to the Canadian Sleep Institute for helping me the way they did. I was a danger for driving (nodding off at the wheel) and just not able to survive with out it. Someone has suggested medicinal Cannabis as it has shown incredible results with many with RLS - you need just the right strain for you, though. And I am not familiar with the use of Canibus. The oil - by Vape or the butter in cookies or in some chocolate -- only about 1/2 tsp at night. I am told it lasts longer for pain management at night. The Vape only lasts a few hours but is a good method too especially in the daytime. You can make your own butter very easily. You do not have to be high for help. So much to investigate and I want to check out the other meds mentioned at the top of this article. I hope some of you can find this here information helpful. Best wishes to you in your search.

[Hidden]

Hi, strange to hear you've been using Sinemet. Sinemet is basically Dopamine and RLS isn't actually due to a lack of dopamine at all. A more usual treatment for RLS at least since 2007 when I started taking medication for RLS is a "Dopamine Agonist", (DA).

DAs don't actually increase dopamine levels, they give a boost to dopamine receptor sites as dysfunctional (dopamine) receptor sites are associated with RLS.

As an anology.

Throwing Sinemet at RLS is like throwing lots and lots of (mud) at a wall with the rationale that the more mud you throw, the more will stick.

DAs aren't about throwing more mud at the wall, they"re about making the wall stickier.

In the UK DAs are the first line treatment for RLS.

Having said that, it's now becoming very apparent that there are problems with taking DAs in the long term. In fact the problems are more or less the same as taking Dopamine itself ( e.g. Sinemet). These include the risk of developing an impulse control.disorder where people develop an addiction for all sorts of things, gambling, eating, shopping etc. Furthermore, the use of DAs (or Dopamine) can lead to the phenomenon of "augmentation". This is where the drug stops working and actually starts to make the RLS worse.

If you read posts on here, you will find very very little mention of Dopamine L Dopa, Sinemet etc. You will find more mention of people using a DA e.g. Pramipexole, Ropinirole etc. AND trying to stop taking them because of the problems they cause, particularly augmentation.

An alternative to DAs ( and especially dopamine) now more used is an alpha2 delta ligand e.g. Gabapentin or Pregabalin. These have much less risk of causing dopaminergic problems.

I think it might be a good idea if you investigate replacing Sinemet with Gabapentin. it is commonly available. But you need to wean off the Sinemet slowly, to avoid withdrawal symptoms.

I suggest you consult your doctor about this. It would be good to gather some information about RLS treatments, Gabapentin and the problems with DAs and Dopamine and show your doctor. If your doctor is prescribing Sinemet, it sounds as if they may not be very well informed about RLS.

[CAW20rlsSINCR in reply to Hidden]

I have had this condition for over 20 years and it is the sinemet that has saved me! thank you for your suggestions I'n not sure if gabapentin is the route I want to take but I will investigate this course.

[Joolsg in reply to CAW20rlsSINCR]

I agree with everything Manerva has said. Being on sinemet for 20 years means you have a very high probability of suffering augmentation (please see the pinned post top right).

Most people visiting this site do so because they have been on dopamine agonists for decades and realise their RLS is getting worse, starting earlier in the day and moving to their arms or back.

Sinemet is the most likely drug to cause Augmentation according to Dr Buchfuhrer (world expert on RLS).

Like you, I thought dopamine agonists had saved my life and were a miracle drug, but they soon became my worst nightmare.

Gabapentin and pregabalin are now the preferred first line treatment for RLS and in the USA, opioids at low dose are more commonly used.

Please read up augmentation and Sinemet. If you mange to get your usual supply and feel your RLS is not getting more intense, then please ignore my comments. I hope you continue to get relief.

[rsears57]

The Vape did not help me at all I take mirapex 0.75 free tablets a day

[Casey953]

I am hoping let someone has given the answer problem doctors are prescribing the generic form of sinemet co_ careledopa