RBD sleep: My wife tells me I'm acting out... - Cure Parkinson's

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RBD sleep

grower profile image
27 Replies

My wife tells me I'm acting out in my dreams, both with talking and physically, often pushing her hard and sometimes hitting. It seems to have come on in the last year and is more and more. (I was diagnosed 9 years ago)

Dr Google calls it REM Sleep Behavioural Disorder or RBD. I'm assuming as it's sometimes associated with PD that others of you are experiencing it too. Has anyone found what brings it on or anything that can help reduce it? We want to keep sleeping together...

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grower profile image
grower
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27 Replies
chartist profile image
chartist

grower,

Studies have shown that melatonin can help :

pubmed.ncbi.nlm.nih.gov/356...

Here is a relevant quote from the study :

>>> ' Melatonin intake was associated with a higher decrease in RBDSQ score compared to trazodone (P = 0.011) and clonazepam (P = 0.004). Trazodone intake was associated with a higher decrease in ESS score compared to clonazepam (P = 0.010). Mild adverse events were reported in three patients in the clonazepam, two patients in the trazodone group, and none in the melatonin group. ' <<<

Art

Bolt_Upright profile image
Bolt_Upright

The first thing you need to do is keep your wife safe. Maybe sleep apart until you get this under control if you really are hitting her in your sleep.

Things that can help with RBD (I have RBD and have been able to reduce it from hitting the wall and falling out of bed to occasionally talking and very rarely kicking a foot [fortunately I always kick down, not at my wife]):

- No violent programs.

- No caffeine in the evening.

- No food after 8 PM.

- Regular reasonable fixed bedtime.

- No alcohol.

I also take Magnolia Extract. I get it cheap at Swanson.

laglag profile image
laglag in reply toBolt_Upright

Bolt,. FYI..... Have you mentioned you have RLS? Have you tried Gabapentin? Two gals at Rock Steady say it helps their RLS.

Bolt_Upright profile image
Bolt_Upright in reply tolaglag

Fortunately I don't have RLS. Thanks though.

715McGee profile image
715McGee in reply toBolt_Upright

You may find this strange. But I've stopped hitting my wife either with legs or fist, by having a 10 minute meditation, or prayer, in which I visualise loving my wife in the deepest way. You may want to try this approach. Comming to bed with inner calmness is of great benefit!

grower profile image
grower in reply to715McGee

great idea :)

Bolt_Upright profile image
Bolt_Upright in reply to715McGee

This is a great idea! Especially as meditation may help with PD so it makes sense!

I use Binaural Beats to mimic meditation (I don't have the hang of meditation). Maybe I should make some Binaural Beats with affirmations in them.

Astra7 profile image
Astra7

I have this under control by taking 5mg slow release melatonin and 10mg CBD oil before bed. Long May it last!

When I did have it all my dreams were related to water - swim, surfing, being swamped by big waves. Strange.

Lorraine33 profile image
Lorraine33

Hi there. My husband also has REM disorder. He was prescribed Circadian (melatonin) which seems to have helped.

I do find any kind of worry makes it worse.

Jennyjenny2 profile image
Jennyjenny2

Both B1 and melatonin have helped my husband! I can’t be 100% sure which one has the most impact, but if he becomes a little fidgety in the night, we stop the B1 for a few days, then resume.

In the meantime, consider sleeping with pillows between the both of you for safety, or a body pillow.

viragkatt profile image
viragkatt

Melatonin didn't help me, it caused nightmares to me. I use the list Bolt mentioned, and if it doesn't help, I occasionally use clonazepam, which always helps.

bullet65 profile image
bullet65

I have had Parkinsons for about 10 years, and RBD for the majority of that. My doctor has me on an antidepressant that I take before bed. It helps but nothing is 100%. I have very realistic nightmares occasionally and the safety of my wife is paramount. I don't look forward to a separate bed but will do what's best. Sometimes if I'm having a bad night either she or I will go to the spare bedroom.

jrg54321 profile image
jrg54321

King sized bed helps too.

Astronomer90 profile image
Astronomer90

Try sleeping on a side rather than on your back. It helped me.

hmm777 profile image
hmm777

I have had good success with a weighted blanket. Easy to use only when needed and doesn't involve more drugs. Here's the one I use:

amazon.com/gp/product/B075W...

Jennyjenny2 profile image
Jennyjenny2 in reply tohmm777

It’s interesting to note that this weighted blanket is not recommended for

• anyone over 65

• if you have weak or sensitive joints (knees, hip, back or joint pain)

• or for those suffering from cardiovascular and respiratory diseases

Loveinlife9 profile image
Loveinlife9 in reply tohmm777

post a year now, are you still using the blanket and if so what is it continuing to prevent?

hmm777 profile image
hmm777 in reply toLoveinlife9

No, I no longer need the blanket. See my response in this thread for the steps I took that made it unnecessary. And good luck!

healthunlocked.com/cure-par....

tbtie profile image
tbtie

I had the same. Take clonazepam 1.5 at night. Problem solved.

PDFree profile image
PDFree

I sleep alone, no husband but on the occasions when my sister visits and we share my bed or someone I’m traveling with (same hotel room, beds in close proximity) sometimes informs me I’ve shouted in my sleep. I’ve also woken myself up acting out these dreams, either shouting out a name or a command like “no”, never trying to hit or kick, but maybe to reach for and rescue them from something. The shouting and reaching usually will wake me up. These dreams are very real, almost like there’s a fine hazy line between dream and awake reality. I’m quite sure, weird as this is, I’m not doing it at a capacity to hurt someone. I would be concerned though if I was!

fel3k profile image
fel3k

My husband has the same while sleeping. It seems to happen the first hour of sleep. I have tried 5 htp 50-100mg and he seems to sleep better. I believe it’s his over active mind from the PD and this helps with the anxiety from that.

fel3k profile image
fel3k

My husband has the same at night and seems to happen the first hour of sleep. I have tried 5 htp 50-100mg and it seems to calm the overactive mind from the anxiety of the PD.

PDMAMA profile image
PDMAMA

My HWP has had this since January of 2020 except for 5 unexplained months in 2021 (possibly due to increase of his Rivastigmine patch, possibly due to switching to 24/7 on his Duopa pump . Unfortunately at the end of that 5 months he got a mild case of Delta Covid and his dementia has been on the downhill ever since. We sadly no longer sleep together because he is a noisy sleeper in addition to RBD. The only thing that really seems effective (it doesn't totally stop them but it does get rid of the scary "jumping up and looking for scissors to cut himself loose from something" type of activity is clonazapam. He currently takes Melatonin, relaxium sleep, clonazapam, nuplazid, and Trazadone at bedtime. I know...we both hate it but the need for sleep is paramount. His episodes occasionally even with all of this can last up to 1.5 hours! I have learned after quite a few bruises, to approach him slowly when he is having an episode and not get too close until I can judge his "mood". Usually his tremors are pretty bad at the same time from the stress of the dream so rubbing his feet helps calm him. Not sure this helps at all but I guess maybe some people will realize it could be worse. For 1.5 years unless I hired caregivers to come in and sit with him, I did not have a full night's sleep!

grower profile image
grower in reply toPDMAMA

Well you situation certainly makes mine seem small. Thanks for the info, I like the sound of the foot rubbing!

PDMAMA profile image
PDMAMA in reply togrower

And I hope yours never gets to the level that ours has.

laglag profile image
laglag in reply toPDMAMA

I went through a tough time a few years ago with being overmedicated and rubbing my feet helped a lot. 🥊

Fabnus profile image
Fabnus

I’ve had success treating RBD and depression. I would have an episode a couple times a month and it was very mild, basically I would wake up shouting. But I had a sleep study and they found a chin EMG, or chin movement during REM sleep. I’ve also suffered from lifelong depression and RLS. I’ve been off depression meds for months now and feel great. Most importantly I haven’t had an RBD episode in many months, same for RLS. I’ll put my supplements below but I attribute most of the good progress to glynac because I noticed good things very soon after starting it. The NMN/resveratrol was added around the same time too, so I’m not 100%. I suspect everyones situation is different, but wanted to share this in case it helps someone…51 y/o male.

-lots of black coffee in the morning, like half a pot, no breakfast.

-NMN and Resveratrol (combo pill) 900mg (lunchtime)

-B complex (lunchtime)

-Magnesium glycinate 200mg at bedtime

-1000mg NAC and 1000mg glycine at bedtime

-L plantarum probiotic at bedtime

-10,000 IU vitamin D at lunch

-5 mg melatonin followed by 5 mg extended release one hour later (I use remfresh)

-a couple nicotine lozenges a day (I know, I know)

Bolt_Upright

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