Quitting Sinemet

[jimmcar]

I've got a question but the question will come at the end of a long preface. So I hope you have the attention to read my story. Apologies in advance for the long read.

I've been taking Sinemet for almost 15 years. I have had a pretty decent experience with it but in large part I think that is because I have been very conscientious about keeping the dose low (even if I had to suffer a bit) and taking drug vacations whenever I could find something that would alleviate my symptoms.

I only ate raw food for 1 and 1/2 years. That cured my RLS completely for a while but then it slowly stopped working. Maybe because RLS is progressive and my symptons just overpowered the raw food benefits.

Then I followed the advice of a website (rlcure.com/) that advertised "An Absolute Cure for RLS.) That actually worked for awhile but then I got tired of taking 12 different vitamins and homeopathic remedies 4 times a day. I figured, screw it, I'll just take one Sinemet.

At one point, living in California, I kept hearing about the medicinal benefits of cannabis. So I tried that and found that, along with the fun aspects of ingesting marijuana, it did cure the RLS. But after a year, I realized I was taking bigger and bigger doses to get the same effect and I quit, cold turkey. That was difficult! I was taking the twice the Sinemet I had before and still having terrible symptoms every night, for a month. Then, as the marijuana cleared from my system, I could go back to my old dosage of Sinemet.

My current regime is one week of Sinemet, powdered mucuna beans (very effective... it works by increasing dopamine levels but it is a full spectrum medicinal and the effects are much better than Sinemet) and a drop of Deprenyl every other night. The next week I will take a teaspoon of kratom and some cannabis (about 12 mg of an indica heavy edible.) My theory is that alternating like that will save me from developing a tolerance to any of those medicines.

So here I am, 15 years later and still at a reasonable dosage of sinemet (50 to 75 mg a night.) But I am experiencing augmentation. Its very difficult to take a nap during the day and the symptoms are coming on a couple of hours before bed.

Some of the best advice I've ever heard about RLS came from this website - namely that it is best to take smaller amounts of multiple medicines. And the combinations I am taking now are effective, but... the Sinemet, the mucuna and the Deprenyl all work by increasing dopamine.

So here is the question... what is the best way to get off of Sinemet? Has anybody here done this successfully? What is a good replacement medicine for somebody who has been on a dopamine agonist for such a long time?

I am adding a picture of some baby kratom plants. I live in Costa Rica now so I get to grow my own mucuna beans AND kratom. Fun!

[involuntarydancer]

Hi Jimmcar, and welcome back - it’s been a while but I often think of you over there in Costa Rica growing your interesting vegetation. My husband is moving to BVI so I was thinking I might be able to do the same.

Not many on here take sinemet as the next generation of dopamine agonists (mirapexin, ropinerole, rotigotine) tend to be prescribed now but I would imagine the withdrawal process will be similar and it ain’t pretty. There are plenty on here who have withdrawn from either mirapexin or ropinerole and as I say I suspect the process will be the same.

The given wisdom is to reduce gradually unless you are already on a low dose and however you do it to expect 10 to 14 days of virtually no sleep at the end as your rls goes into intense overdrive. Typically the only thing to help with symptoms at this stage is an opioid such as OxyContin. BUT I have read accounts of people who have got great relief using Kratom through the withdrawal process. I wish I had heard of Kratom when I was going through my own traumatic withdrawal from mirapexin.

Your situation is a bit more complicated than most given your fairly complex regime so it is possible that the fact that you have been alternating will mean the withdrawal won’t be so bad. However, augmentation is augmentation and means that your body is looking for increasing amounts of dopamine and most likely that you have too much dopamine in your system.

For this reason, I suspect that you will have to discontinue temporarily the Macuna pruriens also. I don’t know, but I suspect that it may be implicated in the augmentation situation as it delivers dopamine also. You may have to rely solely on Kratom for a few weeks or add in another drug such as an opioid (eg oxycontin or tramadol) or an anticonvulsant such as pregabalin for a while.

[jimmcar in reply to involuntarydancer]

Thanks for your reply. I am getting ready, physically, emotionally and spiritually to quit Sinimet, Mucuna and Deprenyl. That leaves me with Kratom and cannabis as a backup so I don't think I'll be too bad off. However, I don't want to establish dependency and tolerance of those two medicines so i'm going to be looking for something else to alternate.

Have you ever heard of "The Absolute Cure for RLS."? I am curious what the people on this forum think of it.

I know that is a presumptuous title but I did get relief for my symptoms for quite a while using that protocol. I just got tired of having to take all the pills.

[involuntarydancer in reply to jimmcar]

There is some interesting information on that website. It provokes ire from some members on here for some of the claims it makes but if you maintain a healthy sceptisim it can be helpful.

I wish you luck with the dopamine discontinuance. You may find a marked disimprovement in symptoms for a while. Hopefully the Kratom will help with that. I’d say ultimately you will be very glad of the break