Please note: I realized that the articles I referenced were talking about Acetyl‑dl‑leucine, not N-Acetyl‑dl‑leucine. That N may make a huge difference and I hadn't referenced the article I found the N in. So here it is: nature.com/articles/s41598-...
Reddit RLS just posted these articles. Sorry I can't figure out how to make a hot link.
link.springer.com/epdf/10.1...
and this
Thanks for sharing. It looks interesting but it only helped one person. Maybe some members on here can try it & report back if it helps.It's always good to see new meds tried off licence for RLS, especially if they help.
The person who reported it on Reddit has said that she "spoke with a member of their team and they said they are targeting clinical trials for RLS in 2022!" I just asked her which team she was talking about and will update when I receive an answer.
Interesting and this sounds quite promising.
NOTE that this idea that NADL can help with RLS was an accidental finding in one person. In the second study it was tried on 4 people again with positive result.
This is VERY recent, hence no further studies as yet.
The two studies do suggest that the use of NADL for RLS should be further explored.
This would require clinical trials at some point so the big pharma companies need to take an interest.
Particularly side effects and long term consequences need to be discovered.
I imagine something similar happened when it was discovered dopaminergic agents could treat RLS.
The idea that you could take it and the benefit would continue for months when not taking it is attractive.
Please note: I realized that the articles I referenced were talking about Acetyl‑dl‑leucine, not N-Acetyl‑dl‑leucine. That N may make a huge difference and I hadn't referenced the article I found the N in. So here it is: nature.com/articles/s41598-...
Hi, the article is very interesting indeed! But the research on them wasn't with the NAD it was just the ADL as I read it.. Or am I missing something? Thank you so much for finding & sharing. I'll be obtaining this to trial ASAP!
Yes. It is a little confusing. I have seen both mentioned in this thread on Reddit. Sorry I didn't include this article which mentions NAD. nature.com/articles/s41598-...
Found a site to purchase 25g for $56US - that's about a 5 day trial - if you use the amounts in the study. But - the washout time frame might make it affordable.
sigmaaldrich.com/US/en/prod...
Was just on this web site - thanks for posting. Dumb question - is this the same thing as the acetyl version (which looks more expensive?). Here's the one I found: sigmaaldrich.com/US/en/prod...
🤣 🤣 We're all trying the same thing.. I found a UK (where I live) company & tried to buy it...you can't, they're all chemical companies! It has to be stored at - 20 degrees & is hazardous to handle!
Please note: I realized that the articles I referenced were talking about Acetyl‑dl‑leucine, not N-Acetyl‑dl‑leucine. That N may make a huge difference and I hadn't referenced the article I found the N in. So here it is: nature.com/articles/s41598-...
Hmmm - I don't know. I think the DL version is both mirror images of the Acetyl‑leucine Molecule combination. I don't know but this is probably NOT an approved therapy for RLS but rather research into Vertigo. Another website for possible purchase...
Please note: I realized that the articles I referenced were talking about Acetyl‑dl‑leucine, not N-Acetyl‑dl‑leucine. That N may make a huge difference and I hadn't referenced the article I found the N in. So here it is: nature.com/articles/s41598-...
Thanks! I'm wondering if the regular amino acid leucine would help. May try it (you can find it in supplements).
Please note: I realized that the articles I referenced were talking about Acetyl‑dl‑leucine, not N-Acetyl‑dl‑leucine. That N may make a huge difference and I hadn't referenced the article I found the N in. So here it is: nature.com/articles/s41598-...
Hi thanks for sharing this! I’m a little confused, so is this a prescription medication or a supplement that anyone can purchase?
I realized that the articles I referenced were talking about Acetyl‑dl‑leucine, not N-Acetyl‑dl‑leucine. That N may make a huge difference and I hadn't referenced the article I found the N in. So here it is: nature.com/articles/s41598-...
I was also confused by the absent/present "N", so I compared a few articles, and it seems to refer to the same thing: Fields et al. speak of "Acetyl-dl-Leucine", whereas Churcill et al. say the following: "N-acetyl-dl-leucine has been used as an over-the-counter drug for the treatment of vertigo since 1957 (Tanganil, Laboratoires Pierre Fabre)". In their reference to experiments on RLS, they, however, refer to Schoser et al., who speak of "Acetyl-DL-Leucine". Wikipedia (albeit certainly not the best source) uses the two synonymously as well).
Since Churchill et al. explicitly list Tanganil, I am starting the regime tried out by Fields et al.'s research subject today: 2g morning, 2g noon, 1g night. I will report.
Churchill, Grant C., Michael Strupp, Cailley Factor, Tatiana Bremova-Ertl, Mallory Factor, Marc C. Patterson, Frances M. Platt, and Antony Galione. 2021. ‘Acetylation Turns Leucine into a Drug by Membrane Transporter Switching’. Scientific Reports 11 (1): 15812. doi.org/10.1038/s41598-021-....
Fields, Taylor, Benedikt Schoser, Wolfgang Oertel, Michael Strupp. n.d. ‘Acetyl-dl-leucine improves restless legs syndrome: a case report’. springermedizin.de. Accessed 29 December 2021. springermedizin.de/acetyl-d....
Schoser, B., Schnautzer, F., Bremova, T. & Strupp, M. Treatment of restless legs syndrome with acetyl-DL-leucine: Accidental findings and a small case series. Eur. J. Neurol. 26, 694 (2019).
Please keep us posted on how this works for you. I may want to share some of these findings with my neurologist and see if she will get me a prescription for Tanganil. L-leucine is available on line in the US but it looks like the acetylation may be needed. This is obviously getting the attention of some pharmaceutical folks at "IntraBio LTD". Check out this patent application:patentimages.storage.google...
Here is my update after 18 days of taking Tanganil: When I started, I was on 0.52 mg Pramipexole and had 25 points on the RLS scale. I have gradually reduced the Pramipexole to 0.26 mg. DAWS were horrid for the first ca. 10 days, but by I now have only 14 points on the scale, so I am cautiously optimistic that this works for me. I will keep you posted.
Thanks for checking in. You are probably the only one on this forum to trial Tanganil. It does not appear to be available in the US unless you want pharmaceutical grade. I was wondering if you ever tried gabbapentinoids or opiods for your RLS?
Nimue76, how are things working out for you?
Unfortunately, I do not really know because the Pramipexole withdrawal has been a nightmare, with both severe mental distress and bad RLS flareups after each dose reduction. So, I have no idea what it would be like without the DAWS. I am now on 0.09 mg of Pramipexole (final step) but caved in after too many very bad nights and started to take 200 mg of Gabapentin. Once I am through the last flareup (which I assume will follow once I come off the Pramipexole entirely), I'll see what happens when I do not take the Gabapentin. Since you asked, I had never taken Gabapentin before, since it is not first-line treatment in Germany.
Hi Nimue76 ,
I came across a recent paper, Acetyl-DL-leucine in two individuals with REM sleep behavior disorder improves symptoms, reverses loss of striatal dopamine-transporter binding and stabilizes pathological metabolic brain pattern—case reports:
researchgate.net/publicatio...
There are some interesting findings,
"In 2020, we treated a PD patient, who also suffered from Restless Legs Syndrome (RLS) and the phenotype RBD, with the modified amino acid acetyl-D-leucine (ADLL; 5 g/day orally). Within 2 weeks after initiating ADLL treatment, the patient’s RLS symptoms had substantially abated5. In addition, after 5 weeks of ADLL therapy, the patient reported an improvement in the two key clinical features of iRBD: the disappearance of aggressive dreams and a considerable reduction of dream enactment."
I was wondering if there are any updates on your situation with the drug. Have you noticed any benefits, shirt term or long?
Joolsg SueJohnson amrob123 Madlegs1
Hi MrCrow,
Thank you for the reference! I have actually not kept trying Tanganil, because 600mg Gabapentin work absolutely perfectly for me. I have no more than a day every two months or so where I have any significant symptoms. If you are thinking of trying Tanganil, good luck!
Has anyone tried Near Infrared Light Therapy?
Has anyone else tried GABA?
Has anyone tried Niacin for RLS?
Has anyone tried hypnotherapy?
