Has anyone dealt with REM Behavior Disorder (RBD )

So my husband has dreams involving movement and talking, but they are not violent situations he is in. I think this is maybe a mild form of RBD, He had a DatScan as part of a research program and is positive for alpha-synucleon folds which suggests he will some day have Parkinson's. So far he has no other symptoms and except for the research we would never suspect he may get Parkinson's. He is 82, and physically well and strong for his age.

I had taken Sertraline (Zoloft) for years and my doctor had switched me to Duloxetine (Cymbalta) to help with a musculoskeletal issue for a year or two when I had my first RBD incident, throwing myself out of bed, uninjured. Several years later it happened again, acting out a dream/nightmare, and I had a minor injury above my eye. My neurology NP ordered a CT scan, which showed nothing. Had a sleep study, no REM apparent but dramatic RLS and PLM. But sleep Dr. said to remove lamps, etc. around bed and protect bed partner. Started Ropinirole (Requip), which I discontinued after augmentation (increased symptoms) and is no longer state-of-the-art treatment. Had another incident, throwing myself out of bed in spite of a bedrail and injured my eye, having to go to the ER. Ophthalmologist said night stands are hazardous--true. Incidents decreased with a switch to Desvenlafaxine. Also got a bigger bed after accidentally flopping my arm onto my spouse. SSRI or SNRI induced RBD seems NOT to be a precursor to onset of either Parkinson's or Lewy Body Dementia or to follow the typical timeline of development of those disorders.

My husband was diagnosed with RSBD in 2019. I figured out after a few years that he had it when he was married before; sadly they divorced because she thought he was abusing her at night! Horrible.

After two years of marriage, he had a sleep study and was diagnosed.

They prescribed a drug (klonazepam .25 mcg) that sent him rapidly into a very intense dementia. His neurologist immediately helped me wean him off. He warned me that his brain is easily affected by prescriptions, so be mindful of this when doctors prescribed drugs.

He returned to his baseline MCI. I don’t think this is true for all RSBD patients, but it was for him.

You may only have RSBD and changing your meds may help your memory come back. Our medical center gave a great all day online seminar that discussed all of this and it was so helpful after all my late night researching when I was afraid to go to sleep next to him.

Did you ask about the white matter?

@peterwmoon

How frightening--so sorry you are going through that. Have you seen a seizure neurologist? Best wishes

I discovered that my husbandhad REM sleep disorder on our honeymoon when he flailed around and grabbed my pillow in our sleep and wham! my head hit the mattress. It only got worse and he had it the duration of our 59 year marriage. I eventually ended up in my own room. He died with Parkison's/lewey body dementia at age 80. He never would admit he had the disorder and had no medication for it.

I am so sorry that some of you all have had to suffer with a partner's having REM behavior disorder. I am not familiar with this disorder but believe, after reading your posts, that I may have this disorder. Even though I have never been violent, I have never slept well; and I have been told that I almost never have REM sleep, that is, truly deep sleep. I have been diagnosed with fibromyalgia. I want to know more about how I can get diagnosed with the disorder. I will appreciate any guidance.
Thank you!

Your doctor should refer you to Sleep clinic
You will be then monitored during sleep overnight
I was diagnosed and have been taking Melatonin which has controlled it

@emyliander melatonin stopped my night attacks

I've had kicking and talking episodes periodically for years, that have gradually gotten more frequent.
Had a sleep study many years ago that was inconclusive. Same with a neurological eval and some MRIs.
Like @looplu79 , I've had good luck with melatonin.
I try to use as low a dose as possible, none being preferable, and keep 1, 3, & 5 mg tabs on hand. I use quick melt tabs and can split them for fractional dosing.
If I have an episode, I start at 3mg the next night and increase until I don't get any reports from my partner.
I've gotten as high as 12mg, temporarily.
Once I'm free of reports for the next several days, I'll slowly back off the dose over the following weeks, adjusting upward again if necessary.

Interesting I started low and increased
My neurologist recommend the 5 mg tabs which I take every night
Have not considered lowering the dose as I was worried about the disorder manifesting again I will however discuss this with my neurologist
Thank you