RayRBD

This post is in response to people who likely have undiagnosed RBD. If you have dream enactments, especially vivid and often violent dreams that you remember when you are aroused by the enactment or in the morning, you likely have RBD. The frequency of dream enactments typically come on slowly over a few years, gradually increasing in frequency and intensity. The gold standard for diagnosis is an overnight sleep study with a polysomnogram. I agree with BigUglyGremlin's opinion that if a person is experiencing increasingly frequent, violent and vivid dreams over time, this sleep disorder is sufficient evidence to pursue treatment for the symptoms to avoid serious personal injures or injuring your sleep partner. RBD is not well known across the variety of medical practitioners which is a major challenge. My journey involves participating in clinical studies and keeping up with medical research publications. To learn more about RBD and consideration in participating in the largest clinical studies, go to naps-rbd.org and PPMIonline.org. Safe Travels

This post is in response to people who likely have undiagnosed RBD. If you have dream enactments, especially vivid and often violent dreams that you remember when you are aroused by the enactment or in the morning, you likely have RBD. The frequency of dream enactments typically come on slowly over a few years, gradually increasing in frequency and intensity. The gold standard for diagnosis is an overnight sleep study with a polysomnogram. I agree with BigUglyGremlin's opinion that if a person is experiencing increasingly frequent, violent and vivid dreams over time, this sleep disorder is sufficient evidence to pursue treatment for the symptoms to avoid serious personal injures or injuring your sleep partner. RBD is not well known across the variety of medical practitioners which is a major challenge. My journey involves participating in clinical studies and keeping up with medical research publications. To learn more about RBD and consideration in participating in the largest clinical studies, go to naps-rbd.org and PPMIonline.org. Safe Travels

Yes - a lot of questions and so few answers...yet. They do share information to a degree, nothing that I should write about on this forum but could share off-line. The consistent advice, which is no surprise is to get lots of exercise, eat healthy (plant based diet) and avoid anxiety - be more chilled and stay positive. I am off my highest weight when I traveled a lot in the 1990-2000's and this year am staying below 200 lbs. - determined to slowly loose more so I can keep it off.

I started participating in clinical studies in NYC in 2016 and in Boston 2018. Check out naps-rbd.org for the research site and consider participating at 1 of the 10 research centers around the US & Canada if you can. The web site has been adding more content and resources for inquiring minds like yours. NAPS 2.0 is recruiting more RB patients with $M35 funds awarded in 2021. I gather that you are aware of the "discovery" of RBD in 1986 credited to Dr. Carlos Schenk of Mayo Clinic in MN. We are very valuable candidates for clinical research in the prodromal stage for finding a treatment for use in clinical studies. I'll be signing up once a promising treatment passes to go into clinical trials.
The Parkinson's Progression Markers Initiative (PPMI) is the largest clinical study that I am aware of that includes RBD. You could participate on-line without taking the next step traveling to a center for the clinical studies.

This is a great dialogue, although I cannot keep up with this pace as part of my efforts to chill....I'll commit to posting 2-3 times a month. Stay positive & keep the faith....not everyone with RBD will convert, maybe we will be the lucky 10-15% that don't.... or pass on from some other health condition or accident.

What have you learned that could help RBD patients deal with this chronic condition? Any tips to pass on would be helpful.

Cause & Effect - do loops, makes anyone dizzy and leads to anxiety for many. You referred to a degenerative process....which is where RBD leads most people eventually. The more I learned about RBD, I had a strong urge to do something...anything... which has taken me down the research path. With 4 grandchildren, if I can leave a legacy of contributing to better understanding RBD and the neurodegenerative process that leads to a treatment to slow and even stop the degenerative process, I'll leave a better world. At least I showed up, which is half the battle....

The more people I share my story, the more unique everyone's experience is...no two alike. I see you are very active on this site and have been sharing your story. There are downsides to Clonazepam, although I need my sleep. Even taking 2 mg. at bedtime with 10 mg of melatonin, I still breakthrough occasionally. Just last night I woke up after kicking a guy during a fight to get away. At least I don't throw myself out of bed or injure my wife and generally quickly return to sleep - although retaining a vivid memory of my enactment.
It took me several years of experimenting with different dosages & combinations while managing CPAP for Obstructive Sleep Apnea. Even trying to sleep without medication. It's like a switch, I have an active dream when dropping below 1 mg. Clonazepam.

Joining the Forum on RBD - diagnosed in 2011 at age 54 with dream enactments starting slowly in 2007. A lot more information around than 15 years ago. Check out naps-rbd.org

I was diagnosed with RBD in 2011 at age 49, although I recall vivid dream enactments starting in 2007 a few times per month. The symptoms are under control with medication (2 mg clonazepam and 10 mg-controlled release melatonin). I experimented for a few years modifying doses. Need the clonazepam, break through with active dreams taking less than 2 mg at bedtime. RBD still not that well known, although there is lot more information than 10 years ago. Check out naps-rbd.org for more details and consider participating in the Clinical Study.

I was diagnosed with RBD in 2011 age 49. My dream enactments started slowly about 4 years prior to diagnosis. My dream enactments are under control with 2 mg of Clonazepam at bedtime and 10 mg slow-release melatonin.
I experimented using various dosages of both treatments off & on over the first 3-4 years before convincing myself that I need to stay with the dosage to avoid breakthroughs. Alcohol and extreme fatigue can both trigger a dream enactment while medicated. Suggest participating in clinical studies to better understand RBD and the long-term risk. See: naps-rbd.org.