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- December 31, 2017 at 11:27 am #4312Sleepy RBDParticipant
I have been acting out my dreams since childhood, so I thought that I would conduct an unscientific poll among members. Can you relate or do you have stories to tell?
I posted some of this information on the NN forum, but maybe it will also be helpful to post it here. Some quotes and links that hopefully will provide background information to open up the conversation are provided below. Let me know what you think…
“RBD is particularly frequent in Narcolepsy. One study found 36% pts with Narcolepsy had symptoms suggestive of RBD. Unlike idiopathic RBD, women with narcolepsy are as likely to have RBD as men, and the mean age was found to be 41 years.32 While the mechanism allowing for RBD is not understood in this population, narcolepsy is considered a disorder of REM state disassociation. Cataplexy is paralysis of skeletal muscles in the setting of wakefulness and often is triggered by strong emotions such as humor. In narcoleptics who regularly experienced cataplexy, 68% reported RBD symptoms, compared to 14% of those who never or rarely experienced cataplexy.32-33 There is evidence of a profound loss of hypocretin in the hypothalamus of the narcoleptics with cataplexy and this may be a link that needs further investigation in the understanding of the mechanism of RBD in Narcolepsy with cataplexy. It is prudent to follow Narcoleptics and questioned about symptoms of RBD and treated accordingly, especially those with cataplexy and other associated symptoms.”
“RBD was observed in narcoleptic patients even before its first recognition as a clinical entity by Schenck et al.  and was called “ambiguous sleep”  because of its “low phasic atonia with an extreme abundance of twitches and muscular discharges.” The prevalence of RBD in narcolepsy with cataplexy (NC) is high, being clinically evident in 45–61% of patients and polysomnographically detectable in 36–43% of them [8, 9]. Patients with NC are more frequently affected by RBD than those with narcolepsy without cataplexy  and in many NC patients RBD can be induced or aggravated by anticataplectic treatment (antidepressants) ; RBD may also be an early sign in childhood NC.”
Update on REM Sleep Behavior Disorder, Its Management, and Its Strong Link With Parkinsonism
By Carlos H. Schenck, MD
“REM sleep behavior disorder (RBD) was formally identified and named at the Minnesota Regional Sleep Disorders Center in 1986-1987.”
“RBD is uncommon in childhood and adolescence, and idiopathic RBD in children is especially rare, and when present, it can at times be an initial manifestation of narcolepsy-cataplexy. RBD in this age group is most commonly found in association with narcolepsy-cataplexy, or it can be psychotropic medication-induced (as therapy of cataplexy or depression/anxiety), related to brainstem tumor, or to a variety of rare conditions.”3
More information about RBD in PD and a screening questionnaire can be found by following the link below. The questionnaire is at the end of the link.
I hope that’s not TMI, but the weather has me stuck inside… 🙂
Happy New Year!January 9, 2018 at 5:01 pm #4348JasonKeymaster
I love posts like this but I’m a huge neuroscience nerd. I very rarely get episodes but weirdly my dad has had them forever but has no signs of any disease. His are worsened by stress.
According to Uptodate, melatonin is the first line treatment of choice and has good efficacy. I believe they recommend 3mg starting and up to 15 or 20mg until effective dose is attained. I can double check if anyone is interested. It doesn’t work for everyone however.
Edit: oh your link had the dosing information in it! That’s what I get for replying before reading the links!January 12, 2018 at 11:24 am #4371Sleepy RBDParticipant
The contradictions of this disorder and its symptoms, along with its “typical” presentations, are what I think continue to make it hard to understand. For many years of my life, I didn’t even realize that acting out one’s dreams was not the norm. Wasn’t that what everyone did? My mom and sisters noticed it, but I guess at the time it was just accepted as something I did. That is to say, if a certain behavior has been a part of what one has done (for as far back as I can remember) then there would really be no reason for thinking any differently. When I finally came upon information indicating childhood symptoms of RBD as an early or “initial manifestation” of narcolepsy with cataplexy, it was as if that missing piece of the puzzle had been found. Being a woman and having experienced the dream acting symptoms since childhood, I did not fit the norm for “typical” RBD. I am, however, a “yes” to all of the questions in the RBDSQ (RBD questionnaire) referenced on the last page of the final link in the above post.
At times, I have thought that it would be interesting to email Dr. Carlos Schenck who named the disorder. Would he be interested in a story like mine that dates back to before he and his colleagues named it? Would he even accept it? Perhaps he would…anyway, just a thought…
Please know that I definitely appreciate those who are dedicating their lives to this field and hope that there will be an even greater understanding in the future.
I look at it as….if I were studying a particular disease / disorder, I would want to continue to gather as much information as I could from the people who had experienced it. With that in mind, I’ll try to add some examples of my experiences in a future post. Maybe that would be helpful to someone else searching for answers…March 16, 2018 at 11:59 am #5000Sleepy RBDParticipant
That’s interesting about your father. Has he ever told you about any details of his experiences? I have a wide range of things that I have done depending on the dream content. When I wake up from one of these dreams, I can recount with vivid detail what was happening and am often still in the motion or position of whatever it was that I was doing in the dream. If it is very intense and I can’t get myself awake, my husband has to try to wake me up. If I’m not sufficiently out of the dream or awake enough (??), I will sometimes go back to sleep and resume whatever it was. It’s as if I never totally got out of it. It definitely makes for some interesting nights.April 13, 2018 at 1:43 pm #5172Sleepy RBDParticipant
As promised above, an example…
Recently I had a dream that involved plunging myself into a river to rescue a toddler who had fallen from a large deck / overlook area that extended out into the river. The deck had railings and a gate that was supposed to be locked. The toddler, who was fortunately wearing a life jacket, and an older child were close to the gate. Somehow the gate was unlocked, opened, and the toddler fell into the river. The river had a rather swift current with a set of rapids and rocky area just downstream. Perhaps it was from my previous experience as a lifeguard in my younger days or just a heroic heart (LOL), but I immediately jumped into the river and began swimming towards the child. When I woke up, I was still “swimming” towards the toddler. My body was diagonally positioned in the bed with my head near the foot of the bed on the opposite side from where I typically sleep. My arms were stretched out still moving in a swimming position with my legs behind me kicking also as if I were swimming. It was kind of a combination of a partially sitting up and leaning over or lying down position. I guess it was my body’s best attempt or adaptation of swimming while in a bed. Although I was very close to the child, I had not made it to her when I woke up. Since I had not been successful in my rescue attempt, it was difficult to shake that feeling when trying to go back to sleep or while resuming sleep…April 13, 2018 at 2:07 pm #5174JasonKeymaster
@Sleepy RBD, whoops somehow I missed your earlier post! My dad’s episodes are usually violent with someone attacking him or a similar scenario. Generally this results in him swearing quite loudly and threatening back while asleep (not a fun person to sleep in the same room as, haha). He once dreamed someone was attacking him and he was choking them in response, only to wake up to his girlfriend screaming and his hands wrapped around her arm. He thought it was a pretty funny story, her not so much!
That sounds like a pretty intense dream! It’s weird how dreams can feel so real that they disturb your emotions for a while after you wake up.April 13, 2018 at 4:06 pm #5176Sleepy RBDParticipant
I’ve also had many of the fighting off or fleeing from the attacker dreams through the years. My husband has learned to “roll with the punches” (and kicks) figuratively and literally, so I’m sure that he could relate to the experience of your father’s girlfriend.April 15, 2018 at 12:23 am #5184JasonKeymaster
@Sleepy RBD, reducing stress seemed to help him reduce the episodes a lot. While he doesn’t have N, it might be worth it to try some stress reduction strategies if you’ve noticed an increase in episodes during stressful times.April 16, 2018 at 10:36 am #5196Sleepy RBDParticipant
I’m definitely a proponent of trying to encourage minimizing or reducing stress along with other healthy lifestyle choices. In my awake hours, I really do have a peace loving, even keeled personality and am one who tries to avoid “drama”. 🙂
I’ve tried to look for correlations through the years as to when I might be more prone to having a more active night, but I mostly have just accepted it all for what it is. I look at it as something that I have done for so long that it was / is just my “normal”. That is to say, that dream acting has always been a part of what I do (at least for as far back as I can remember).
I think that I mentioned in a former post on NN that my mom used to talk about the blankets that my older sister and I had tucked in at the foot and sides of our beds. After a period of time, mine became threadbare, whereas my sister’s was fine. My mom would say that she thought I must “have run all night”. I think that I was just acting out whatever was going on in my dreams.
I know that the RBD episodes involve the dreams that have strong physical activity or vocalization of some kind within the dream. It may be a very involved dream like the swimming one or something simpler. For example, one night I dreamed that I was washing my hair. I woke up with both of my hands in the back of my head still scrubbing with my fingers interlaced in my hair.
On yet another night, I was out for an enjoyable hike when I unfortunately stepped in a bed of fire ants. When I woke up, I was still brushing off my lower legs, ankles, and feet to get rid of the ants. I hope that these other examples will provide a broader picture or balance to the previous posts. Sometimes the dream content involves just the activities of day to day life, while other times more dream like situations are involved.
Last night, I woke up laughing, went back to sleep and woke up laughing again a little later. You just never know what you might get…
Now, in keeping with trying to promote healthy habits, I am going to try to get out the door for a rather brisk morning hike. I’ll be on the lookout for fire ant beds along the way…June 26, 2018 at 9:27 am #6438Sleepy RBDParticipant
We have had a definite increase in our production of blueberries this year which equates to more early mornings spent harvesting them. I guess for that reason, I decided I needed to continue the activity the other night. While trying to extend my reach deep into the center of a bush to pick some berries, I woke up with my arm outstretched and my fingers in a picking position. That was a new one, even for me.
I’m adding it to the list of gestures that I’ve done under 6.3 below…picking berries. 🙂
Table S1—RBDSQ: (adapted from Stiasny-Kolster et al., 200718)
N Question Answer
1. I sometimes have very vivid dreams. yes/no
2. My dreams frequently have an aggressive or action-packed content. yes/no
3. The dream contents mostly match my nocturnal behaviour. yes/no
4. I know that my arms or legs move when I sleep. yes/no
5. It thereby happened that I (almost) hurt my bed partner or myself. yes/no
6. I have or had the following phenomena during my dreams:
6.1. speaking, shouting, swearing, laughing loudly yes/no
6.2. sudden limb movements, “fights” yes/no
6.3. gestures, complex movements, that are useless during sleep, e.g., to wave, to salute, to frighten mosquitoes, falls off the bed yes/no
6.4. things that fell down around the bed, e.g., bedside lamp, book, glasses yes/no
7. It happens that my movements awake me. yes/no
8. After awakening I mostly remember the content of my dreams well. yes/no
9. My sleep is frequently disturbed. yes/no
10. I have/had a disease of the nervous system (e.g., stroke, head trauma, parkinsonism, RLS, narcolepsy, depression, epilepsy,
inflammatory disease of the brain), which?June 26, 2018 at 10:39 am #6443FerretModerator
Quick, while it’s still in your mind… what did you eat and drink yesterday and last night. Curious because my most vivid dreams occur after ingesting certain food chemicals. I know it’s going to happen but sometimes I just want BBQ sauce (for example)or whatever.June 26, 2018 at 11:12 am #6447Sleepy RBDParticipant
Hmmm…That’s interesting. I’ll have to try to see if I can determine any correlation for such dreams in the future. Unfortunately, that dream was from about a week or so ago. I just haven’t had a chance to post about it, but I thought about it this morning while I was picking berries. I have a tendency to act out whatever the dream content may be if it involves a strong physical or emotional response. I guess the extra effort in the dream to pick those particular berries caused the physical response that woke me up. (??)
I could probably write a book about “The nighttime adventures of a dream actor”. Do you have any suggestions for a good title? lolJune 26, 2018 at 11:19 am #6450FerretModerator
“While I Lay Sleeping”June 26, 2018 at 11:44 am #6452Sleepy RBDParticipant
A great suggestion…with your permission, I’ll be sure to list you in the title credits.
For me, one of the complex parts about this disorder and the overlapping part with narcolepsy is that when I’m awake my body will respond as it should when I’m asleep (cataplexy). Then, while I’m asleep, I act out my dreams when I should be experiencing REM sleep with atonia (?). It is quite an interesting mix.June 26, 2018 at 12:05 pm #6454FerretModerator
Thanks but I don’t want any credit. Glad to help out… always. I’m grateful that I don’t act out though. Such a lovely unique health problem that we have.
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