I posted some information previously about my case and here is a follow up.
I finished a 12-week cure on Tanganil a month ago. I did not want to proceed further due to the fact that I didn’t see a notable decrease in my night mare events. They were in fact very low but I didn’t get rid of them completely.
But look at the graph! Since I stopped taking Tanganil, and it is now more than 4 weeks ago, I have not experienced one single nightmare or movement or any sleep problems whatsoever.
Last Thursday, I deliberately took a a few glasses of wine, had a late dinner, did not exercise and did not take my melatonin. Still nothing happened!
I sleep better, I have no restless legs anymore and no nightmares.
My plan is to decrease the melatonin dose to 2 mg and continue without Tanganil for two weeks more, then another 6 weeks cure. Later possibly start taking N-acetyl-L-leucine. What do you think?
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Flipper_B
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I don’t know if it’s beneficial. I do not have PD (yet) but RBD is in many cases a prodromal phase (a phase before) to PD. But I think you can have PD without RBD and without RLS, and you do not 100% necessarily develop PD if you have RBD. So it’s a very complicated syndrome.
As usual I add a disclaimer that I have no education in these matters and I am not telling anyone what is the right thing to do. But in fact I have been reading all sorts reports about PD and RBD and related issues at least on average an hour every day the last year…starting to get a bit obsessed actually, would be nice to be able to forget about it for a while.
Don't forget that lots of people have those symptoms and it never develops into PD.
My friend and son in law have had those symptoms for years and years, as an example and don't have PD.
You know stress is a precursor to lots of other ad stuff though...........so, what will be will be. You are not in control of this, so all your fretting won't accomplish anything but perhaps more diseases.
Well, right now I actually feel in control and I am not stressed anymore. This is my way to deal with a problem and it works for me. I had cancer twice already but am totally recovered, and of course that adds a lot of stress and could be a reason why I developed other symptoms. But PD has been common on my mother’s side in the family so probably it is genetic in my case.
Very interesting, thanks for sharing. Keep us posted. I wonder what a mechanism of action is, that it apparently solves something but you still have symptoms. Maybe it's because your body is too busy curing parts of it?
But since 4 weeks I have no symptoms at all. What is strange is that I kept on having symptoms while taking the medicine. It could also be a coincidence and perhaps it would have stopped also if I had kept on taking the Tanganil.
One thing not studied as far as I know is if it could be beneficial to stop a Tanganil (or equivalent) cure for some weeks for a washout period, you never know, it might be better. But these are the things that have to be investigated. We have to hope that studies will start in Europe and Asia now, or there might be some privately financed studies in the US receiving enough contributions. Unfortunately one of my close relatives, who is a neurologist studying PD in Boston, is not sure she can continue with her studies due to the latest cuts in finances from the government.
what is the dose for leucine that you are looking at?
My husband has been taking it for 3 weeks about 3 g and so far not much improvement. He is still having nightmares and on a scale of 10 where he falls off the bed he is 6.5. I guess you could say he has improved because he has not fallen off the bed since he started leucine but he is still talking in his sleep and kicking.
I started with 3 grams a day but increased to 5 after a few weeks. The manufacturer says the maximum dose is 4 grams a day for maximum 6 weeks. It should be dosed depending on body weight according some scientific studies. I did not experience any side effects.
As you can see in my diagram, it did almost not improve my symptoms at all during the 12 weeks I took it. It might need some time to work, as a minimum 3 weeks, according to the scientific study from September.
The active ingredient in Tanganil is N-acetyl-DL-leucine, which is very different.
I see now that I used the word acetylleucine in my diagram, which is correct but there are different types of acetylleucines, the D, the L and the mix of these=DL, and Tanganil is DL which was the one I used for my treatment .
What a great result! Hopefully it can help others. From a quick peek at the graph, the improvement seems most closely correlated with your dosage of melatonin, and not particularly correlated to your time taking Tanganil. Does that sound right to you?
Regardless, well done for improving what must have been a very frustrating symptom.
Yes and no. You are right, the decreasing trend correlates somewhat with the melatonin dose and use, and it is proven that it can take a long time for the melatonin to work, and also the effect of it can last for a very long time after you stop taking it.
The significant decrease in the graphs came in July with the increase of HIT exercise and stopping intake of alcohol and sugar.
Melatonin has been used for decreasing the symptoms of RBD for decades, but nobody has been cured, and it has never been proven to slow down the progression of alphasynucleinopathies in the brain or reverse them. Which is the case of N-acetyl-DL-leucine. Everyone interested should study the Nature scientific report from September as in the link above posted from ”PDTom” carefully. I spent days trying to understand it, checked all background data, read all the peer reviews. It was difficult since English is not my best language but it was worth it. Then again, it is an extremely small study of only 2 patients without placebo control. But the brain scans are what is important in the study, you can’t neglect those. They show definitely a reversal of the disease.
I have RBD and Parkinson's. I began to notice RBD ( and shorter, less refreshing sleep) about a year ago. I only wake up kicking, punching or screaming a few times a week, but when I had a sleep study about 6 months ago, they recorded over 60 episodes of REM sleep without atonia. So on nights when I have no subjective RBD episodes, there's still an underlying issue. My point is that although it is great if taking tanganil has reduced your subjective experience of bad dreams and RBD episodes, it seems a little quick to talk about being cured. It would be great to see that proven by a sleep study. I too am going to try acetylleucine and am hopeful it will be of some help, but I think there's a lot more to learn before we use the word cure. I'm just a skeptic when all the evidence for something is anecdotal or observational....but that doesn't mean I won't try it.
I couldn’t agree more. The head line has a question mark in the end. I am going to have a sleep study done in April or May, haven’t got the exact schedule yet. They will also perform a scanning of my brain to see if there are signs of progression towards PD.
But my sleep has become much better and continues to improve, last night I slept the whole night without (as far as I remember) wake up.
I used to take melatonin for my RBD. I had to keep increasing the dosage, and then it almost seemed that the melatonin was causing the RBD to act up! So I quit. I now take Klonapin; but only when I’m around others at night (I live alone) because it’s so addictive. My psychiatrist doles it out. Are leucine and Tanganil easy to get? I yell out probably every few months and actually fall out of bed once a year or so. I believe I have early Parkinson’s, due to this issue as well as having chronic constipation and my right arm doesn’t swing. I’m 67. Thanks for any advice.
I am in contact with a neurologist frequently and she told me not to take more than 3 or maximum 4 mg melatonin because the body can sometimes decrease its own production in case you take too much, and it will just get worse. Tanganil is possible to buy without recipes over the counter at French pharmacies. As far as I know it is the only country. Tanganil contains the active ingredient acetyl-DL-leucine.
I travel frequently between Sweden and Spain so I just go to a pharmacy close to the railway stations when passing France by train, it’s the only country where you can buy it over the counter as far as I know. These are tablets.
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Melatonin
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Parkinson sufferer looking insomnia cure 
How much melatonin can I be taking for REM Sleep Disorder, (RBD), associated with Parkinsons. 
