Levodopa Can Help If Used Correctly

[VladimirF]

I’ve found a way to use Levodopa, and it finally works for me—previously, I had very negative effects. In short, I take it not before going to bed but after I start experiencing RLS symptoms. At that point, dopamine levels are low in the brain, which prevents the neurotoxicity that causes the side effects. Additionally, I can use only half the usual dosage, which is sufficient.

[SueJohnson]

Levodopa is a dopamine agonist. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

[VladimirF in reply to SueJohnson]

Yes - I know that. But all these issues are the result of dopamine neurotoxicity, which occurs when dopamine levels are too high. My method helps to avoid this. You can read more here: healthunlocked.com/rlsuk/po...

[SueJohnson in reply to VladimirF]

Dopamine levels are lowest at night and that is when one would take levodopa if you were taking it for RLS. That is also when RLS symptoms generally start unless one is suffering augmentation.

[VladimirF in reply to SueJohnson]

No—people often take Levodopa before going to bed, when dopamine levels are at their peak. This is a really dangerous approach

[SueJohnson in reply to VladimirF]

You're wrong - They are low then nhs.uk/conditions/restless-...

[VladimirF in reply to SueJohnson]

Nobody has actually measured that directly. Do you experience RLS symptoms in the evening? I don’t. That might give us a clue.

[SueJohnson in reply to VladimirF]

You didn't read the article? You don't believe the nhs.

And yes most people on the forum including me experience it in the evening.

[VladimirF in reply to SueJohnson]

I think you mean that you experience RLS symptoms after you lie down—probably while watching TV or relaxing. But you’re not exactly active during that time, right? I have a post about a possible reason for this: healthunlocked.com/rlsuk/po...

[VladimirF in reply to SueJohnson]

If that's the case, it’s similar to already being in the bed. The issue with taking Levodopa in the evening is that you may not have been inactive long enough before taking it, meaning your dopamine level could still be high—with all the potential negative effects that come with it. By taking Levodopa only when you start experiencing RLS symptoms, you can be more certain that your dopamine level is low—that’s the idea.

[SueJohnson in reply to VladimirF]

Believe what you will.

[DogBella in reply to SueJohnson]

is this the same as Carbidopa Levodopa generic for Sinemet?1

[VladimirF in reply to DogBella]

Carbidopa prevents the conversion of Levodopa to dopamine outside the brain, allowing more Levodopa to reach the brain. While it reduces peripheral side effects, it does not directly impact dopamine levels in the brain in a way that would prevent augmentation or other central side effects.

[SueJohnson in reply to DogBella]

Yes except without the carbidopa. Carbidopa works by preventing levodopa from being broken down before it reaches the brain however levodopa still gets into the brain when used alone.

[Joolsg]

I'd be interested to see whether your unique method still works in a year or 18 months time.The universal view amongst experts is that Levodopa has the highest rate of drug-induced worsening (augmentation) & that is why it stopped being prescribed for RLS over a decade ago.

I would never feel comfortable suggesting that any patient takes levodopa. Even using your method.

[VladimirF in reply to Joolsg]

Of course, if you take it when your dopamine levels are high, it can be harmful—you can damage receptors and even neurons due to neurotoxicity. However, if you have RLS symptoms, it indicates your dopamine levels are very low, so using Levodopa at that point is no longer an issue—at least as long as your dopamine doesn’t spike sporadically at night. This isn't typically the case if your RLS is stable and occurs consistently, like five hours each night, for example.

With the usual approach, Levodopa stopped working for me after 3-4 days, and I experienced severe side effects with only minimal relief from RLS. I tried starting it a few times since it’s still the first-line treatment for RLS in Germany. But now, after two weeks with this new approach, I’m experiencing significant benefits and no side effects at all.

[Joolsg in reply to VladimirF]

How do you avoid up regulation/hyper excitability of the D1 receptors? How long have you been taking levodopa?

[VladimirF in reply to Joolsg]

Actually, I already answered both questions in my previous response. Taking Levodopa when dopamine levels are already high can increase dopamine further, potentially leading to overstimulation of receptors and increased receptor sensitivity, known as hyperexcitability. My method helps avoid this issue by timing Levodopa intake when dopamine levels are naturally low, reducing the risk of receptor overstimulation and associated side effects.

[Joolsg in reply to VladimirF]

I understand the hypothesis but there's no way for anyone to measure or know when their dopamine levels are very low. We know dopamine levels are highest and start to rise from around 6am in the morning and that they drop at around 6pm and drop further in the evening /night. So according to your hypothesis, taking levodopa at 6am would be best??

[VladimirF in reply to Joolsg]

Every RLS patient has an effective way to gauge dopamine levels—their RLS symptoms. When symptoms become strong, that’s the ideal time to take Levodopa. In my experience, symptoms usually start between 11 p.m. and 2 a.m., which is the best time for taking Levodopa. After that, my dopamine levels remain consistently low until around 6 a.m., when levels naturally begin to rise.

[Joolsg in reply to VladimirF]

I'm pleased you seem to have found your solution & hope it continues working for you.

[Mongolia2020]

I also hope it continues to work for but I don’t hold out much hope, after experimenting with dopamine agonists for around 15 years. I will be extremely surprised if you do not start experiencing augmentation at some point. It will be wonderful for you if I am wrong.

[VladimirF in reply to Mongolia2020]

I experienced augmentation and many side effects—I had the same reaction as you. The difference now is that I no longer have these issues because I changed my approach.

[UsableThought in reply to VladimirF]

Two weeks is a very short time. I think right now, no one who has experienced augmentation with Sinemet or straight LD is going to be willing to try your experiment. Building on Joolsg’s comment, I think you’ll have somewhat more credibility if you come back “in a year or 18 months’ time” to report your method is still working without augmentation.

And even if this strategy still seems to be working for you that long, you would still be an n of 1 - i.e. your personal results still could not be safely generalized to all folks with RLS, given the wide variation between individuals & how little is yet known about subtypes. Reporting to the group on your personal experiment is fine, but I don’t think you should be calmly stating at this point that this is a safe method for others to try as well. You do not have the data.

- R.

[VladimirF in reply to UsableThought]

Understood! However, those considering Levodopa (for example, as it is still a first-line treatment in Germany) may still find my post useful.

Another aspect: my method works with significantly lower doses of Levodopa— twice less is enough, and I still see no need to increase it. In fact, I'm even considering a reduction now :). So, it might be worth a try, even if you've had a negative experience in the past—this time, the dose is much lower, and you know not to increase it. From my point of view, it’s safe.

[VladimirF in reply to UsableThought]

What you're saying is like telling people not to use a saw for cutting boards because you've already tried cutting with the teeth facing up and using the handle to cut—it didn't work, and people got seriously injured. Of course it didn't work—that's a idiotic to hold a saw this way, just like taking a dopamine precursor before bed when dopamine levels are already at their peak. But that doesn’t mean a saw is a bad tool. You just have to use it correctly—just like Levodopa.

[UsableThought in reply to VladimirF]

Let’s not go down this road.

[Ticki]

I think it’s great that that’s working for you and that you are trying to find a solution for your situation. I mean some people are literally stuck having to take that medication against being able to take anything else, so I don’t believe your advice is bad at all in that situation.If I was forced to take that medication on a regular basis, I would try your experiment out, but yeah, it’s a horror Drug always be careful ❤️‍🩹