Thoughts on iRBD progression

[Flipper_B]

Some of us who have this disorder can easily relate to being triggered by scary events or movies seen in the evening, which then result in kicking or screaming during REM sleep. For myself, it’s sometimes enough with nearby police sirens in the evening, as an example.

But if we get an increased amount of these dreams, does that in this case progress the disorder? I mean, a symptom of a disorder could hardly logically make the progression of this disorder faster? So: is there really a relationship between the amount of abnormal REM dreams and the progression of a breakdown of neuronal functions?

Clearly- if we reduce the dream events by medication or a healthy lifestyle, we can logically assume that the progression decreases or even reverts. But can we decrease progression by avoiding horror movies? What are your thoughts?

[Bolt_Upright]

Very interesting Flipper. I think I have reduced my RBD dramatically through diet and supplements and broccoli sprouts, and those protocols are things that I have some (maybe wrong) understanding of why they should systemically be helping me stop progression and maybe heal a little.

So... if I vary from my protocols, especially my gluten and lectin free diet, I expect both more RBD events AND I think I am seriously damaging my chance of recovery by allowing things like intestinal permeability to increase, viral titters to rise, and systemic inflammation to increase.

As I have written before, I consider myself a beat up old truck that no amount of TLC will rejuvenate, but If I can stop doing more damage I could maintain my status quo for a very long time.

All that to circle back to your question: Watching a horror movie might trigger an RBD event, but I don't think (I have no medical training) triggering an RBD event in this manner is going to do more damage (unless you fall out of bed) or knock you healing off track. Horror movies don't, to my knowledge, affect your physiology.

I still have occasional mild RBD events. I wish I did not, but I think whatever broke that causes the RBD is going to stay broken.

I hope that made sense. In this, as in all things, I may be wrong.

[Flipper_B in reply to Bolt_Upright]

As far as of what I read about RBD, no one has got completely rid of this disorder although you, myself and a few more seem to have stopped or even reversed the progression. But it seems to be hard to remove altogether. I am also starting to think that there are many different RBD variants. My brother has RBD since childhood and it was much worse during his 20s and 30s and then slowly getting better, and today he is 70 and does not have dream events more than once a week. Sure there is a genetic factor but it can seemingly vary a lot even among siblings.

[Steegen in reply to Flipper_B]

Wow since the 20s seems like a very long time. Does your brother also have PD or a similar disease? Or any signs of developing it?

[Flipper_B in reply to Steegen]

Since he was around 20 or so, he says. Kicking and screaming during the nights (he was living alone) and the neighbours told him to be more quiet during nights. He did not wake up. He has no signs of PD at all but we have an uncle and our grandma who died of PD. He has been exercising his whole life swimming, running, weightlifting etc., still doing this, and was always a vegetarian. He never realised RBD was a disorder he had at all until I told him of mine recently.

[Steegen in reply to Flipper_B]

Thanks for the reply

[tomstuff in reply to Steegen]

I feel like this is complicated. I believe you can lessen your RBD events with exercise, diet and stress reduction. And I feel like those very same things can reduce progression of PD/etc. However...

RBD doesn't always progress. My dad who has had PD for 18 years no longer has RBD symptoms. He had them around 10 years ago and now doesn't have any. Maybe he isn't getting into Rem sleep though? Not sure.

[Flipper_B in reply to tomstuff]

Yes, like my brother who had it for 50 years and still has absolutely no symptoms of PD or other diseases. That’s my theory, RBD is not one disorder but has many different variants.

[Rufous2 in reply to Flipper_B]

This study suggests that there are indeed subtypes of RBD. However, the subjects were all people with early PD so unfortunately, those with iRBD that haven't converted to a synucleinopathy yet can't draw any conclusions from their results. 

pmc.ncbi.nlm.nih.gov/articl...

[Steegen]

Interesting question! I've wondered about similar things.

For example, one study found that high doses of niacin helped a few PD patients motor symptoms, but also caused unacceptable nightmares at the same time. I doubt the niacin would advance the PD disease in the brain whilst also making their symptoms improve at the same time? I guess it's possible. But it seems more likely to me that the treatment helped and the nightmares were a side effect.

tandfonline.com/doi/abs/10....

I think I also read here on HU somewhere of someone getting benefit from red light therapy, but that it also caused nightmares at first, then they went away.

[DEAT]

I had sleep disorder even before DX of PD.Try as we might my husband and I have never been able to find the reason (apart from PD )

Scary movies have nothing to do with my nocturnal acting out. Can't seem to identify dietary causes or lifestyle choices

We've stopped looking for reasons/answers. And it is improving.

Slowly less and less frequent.