1 year iRBD study

[Flipper_B]

My iRBD started in the summer of 2023 with vicious dreams, kicking and screaming during sleep, once or twice a week. Saw a doctor in December 2023 and got prescribed 2 mg melatonin per night. My doctor also told me to write a diary on everything concerning the iRBD.

So here is my 1 year study of myself. Before I started with melatonin, the events were worse but I was never jumping out of bed.

After reading the German report about ADLL which came in September 2024 3 or 4 times, plus reading the peer reviews and study the data, I went through my diary and made this diagram with (hopefully) the same score measurements as the German study.

As you can see, it started at a level of around 7-8 before I called my doctor in April and she increased the melatonin dose to 4 mg. That seems to have helped a lot. End of June 2024, I doubled my exercises, cut all alcohol and sugar, and decreased my intake of carbohydrates. This really did it as you can see. A few weeks of decreased exercise in September-October immediately made the bad dreams worse. After that, I bought Tanganil and have now been on it for 12 weeks. I am at approximately the same level (RBD score sum) as July-August. But I got rid completely of my RLS in the last 12 weeks! I was hoping to get rid of my dream events completely but I know I can still improve on a few things with my diet. The very last event a few days ago which scored 2 was clearly stress related. Anyway my sleep is much better and only disturbed by our 3 cats now. I will stop with the Tanganil from tomorrow for 3 weeks and see what happens. I also have some other ideas but will come back later about those. About the ADLL, there are animal studies that suggest the possible build-up of the D enantiomer in the cells, which might be the reason of cognitive decline in long term use? Btw I am 63 and my grandmother and one of my uncles died of PD.

[Bolt_Upright]

What a well written post. That part about the Tanganil is very interesting.

You might consider joining our Zoom calls and chatting about your RBD and protocols. I have been fortunate to reduce my RBD from hitting walls, throwing pillows, and falling out of bed to just occasionally muttering something. I do a lot of things: rbd-pd-protocols.blogspot.c...

Here is the Zoom link. Lots of nice people. You will be welcomed. us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[Flipper_B in reply to Bolt_Upright]

Thank you, I will try to participate in your meeting! I read your blog and I will keep trying other ways to reduce my symptoms.

[MarionP]

Will be very interested to know how you did on the tanganil so please be sure to report back!

[Flipper_B in reply to MarionP]

Yes, I really could not see a noticeable difference for the RBD score sum, as you see in the diagram, 3,25 compared to the long term average last summer of 3,5 is not a good result. However, I also have had restless legs syndrome for decades, and this has disappeared almost completely. I am still a bit nervous that Tanganil with the D enantiomer can build up inside the cells and needs washout periods. I have been in touch with the manufacturer of the medicine but they just claim that it should not be used for more than 6 weeks, they do not want to discuss more. It seems that very high intensity training is giving good results, and although I spent 175 minutes per week training, I am now increasing this to see if it helps. I am actually not that interested in exercising but am on my way to get a body like a 25 year old and I can survive with such a ”side effect”😊