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RBD - My Story

by Sheri
(Marietta, Georgia )

I am a 28 year old female who has been diagnosed with RBD along with another sleeping disorder on top of it to make it even more complicated...


Apparently I have RBD and NREM sleep issues. The NREM is sleep terrors and sleep walking. However, with the RBD my night terrors are real, very, very real. Terrifying is not the word to use. There is no word to describe how scary it is.

Although the RBD allows me to remember my night terrors and act them out the NREM disorder also allows me to not remember what I do as well. So I'll have an RBD episode full fledged...then the next night an episode of the NREM disorder and not remember what I did.

Here's an example, I'll try to be as clear as I can. My doctor told me that what I have is very, very rare so if there isn't anyone here that can't wrap their heads around this one you're not alone. I cannot either!

During an RBD episode and this was what led to my diagnois (I've had both since a child but never went to a sleep doctor until this episode) I had dreamt that I woke up. I didnt' wake up...I was still dreaming and I saw this shadow standing at the foot of my bed. Thinking it was real I screamed, turned over on my stomach and started to crawl to my headboard because in the dream I was pulled off the bed. I remember turning over to see this shadow on top of me trying to kill me. I kicked it with my foot several times and still it came for me. I was fighting for my life I thought until I woke up to see my husband holding me down.

It turns out the "monster" I saw was my husband and he told me that he heard me scream turned over and saw me thrashing about in bed. When he reached to grab me he said I then freaked out and kicked him in the face and stomach more than once.

In my dream I kicked this monster in the face, and stomach. I ended up cutting my toe open on his fingernail as a result of kicking so hard. Since then I've been terrified of any shadows even though I know this was just an RBD episode.

That's not the only severe one I've had. I also dreamt I was visiting my grandfather in the hospice. At this time he was sick
and dying and I was looking out a window. Guess where I was in real life? I was standing on my bed room dresser looking into the mirror as if it were the window. I ended up falling off my dresser and injuring my leg.

That's the RBD part.

The NREM part is what I don't remember and I only know what I do based on my husbands accounts. My most recent episode was last week. I sat up in bed, screamed and started to beat my dog that sleeps in the bed with me. This I do not remember. Other episodes have been cursing in my sleep, sleep walking...all this I don't remember.

Sometimes I'll have episodes of both in one night. There is no explanation for these episodes. I do not know why I have these two disorders or why I never out grew the night terrors or why I have RBD. But, its terrifying to have...not knowing what you will do next while
asleep.

Currently I'm taking Klonopin .5mg and it has worked wonders until recently. I've been on it for over a year now and saw my doctor recently who told me that after a year I'll have relapses of RBD and so we may have to up my dose of Klonopin. There is no cure, it'll get worse.

There needs to be better medication for this disorder. I'm only 28 years old and cannot think of being on it for life.

Having these episodes have made my life a living nightmare and I'm lucky to have been diagnosed at all. I'm currently under treatment for Lupus/Rheumatoid arthritis, possibly...we're not sure what it is but it's inflammatory, so I'm on plaquenil and other meds for it which have helped. Ironically it was my rheumatalogist who suggested I see a sleep doctor when I shared one of my dreams wondering if it could be related to my inflammatory condition.

For all I know it could be. So far I'm the youngest RBD sufferer my doctors' met. I'm hoping to find others out there who are in their 20's or early 30's but there appears to be no research done in this area. I hope my story has shed some light as to what it's like to have this. Although not as detailed as I'd like for it to be, I'd have to write a book on this to fully share my story this is as close as I can get to sharing it without writing a book!

Thank you for reading.

Comments for RBD - My Story

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Dec 07, 2010
 tough to live with
by: Mary LouAnonymous

Yes, you are very young to have this As, I said earlier, melatonin really helped me. I take 3 mg at bedtime along with gabapentin. Good luck,
Apr 13, 2011
 My experiences
by: ElliS

Hi,

Firstly I'd like to say sorry that you went through that. When reading your stories I can completely relate to you, but without the intensity that you had. I've experienced all sorts of things. I've woken up and seen a shadow, like you, with a knife. Petrified as I was I didn't move for hours waiting for it to go away. Ive seen snakes in my bed. I've chased ninjas away. I once opened a window, on the second storey, and piled up all the sheets next to it and wondered why in the morning I was freezing. I'm 26, male and can remember having incidents like this since i was 14. Some scary, some funny. Others I don't remember at all. Like this morning. I woke up and all my pictures in my room were on the floor. I haven't sought treatment yet but am getting closer to doing something about it. Would you recommend it?
May 20, 2011
 my 11 year old
by: lack of sleep

Hi, my daughter seems to have these problems. We're going through doctors now. I've slept in her room a number of times to keep an eye on her and I've woke up with her pulling me by my hair, or climbing up at the window screaming for help. She has also stood in the doorway looking like she is fighting and then falls to the floor and covers her head begging for (whatever it is) to leave her alone. I've found her in her cupboard asleep and even sitting on her bed looking like she is swatting flies. If she falls asleep downstairs on the sofa I wake her and say off to bed and she goes the other way and I ask her where she is going and she tells me shopping. I can have a full convo with her for about ten minutes then she is with it. I can be watching tv and she is upstairs roaming about. No one will stay over night with her as she scares people, even her dad's girlfriend won't have her in the same room as she scared (lovely lady not) but the doctors have palmed me off for years saying it's just sleep walking and terrors but i think it's much more. I've not got stair gates because of my 4 year old, I got them because of my 11 year old. Has anyone got any advice how i can give her a normal life? She can't sleep on bunk beds which she wants, she can't go away with school.
Jul 06, 2011
 hubby has rbd
by: Anonymous

My husband (who is in his 20's) was diagnosed with RBD about a year ago, after a very violent episode when I received a minor concussion. He has been on 1 mg Clonazapen (sp?) ever since. The medicine worked quite well for for first year, but has started being less effective, which I'm told is normal. As his wife, I hate to think that we might have to resort to sleeping separately for the rest of our lives. I am also greatly concerned about the development of Parkinsons down the road. Has anyone found a doctor in the US that specializes in RBD? Our doctors knew of it, but clearly had very little experience with it.
Sep 09, 2011
 I think I have this
by: Meg

I am going to see the doctor soon because I have decided I need to do something about it.

I'm pretty sure I have rbd, but i'm only 17! But I act out lots of my dreams, sometimes smashing at the wall behind my bed and getting out of bed 'catching' things. I end up with bruising over my legs from tripping over and running into things (as my room is a mess). Sometimes I act out non-violent things like knitting and playing with mice. I might do this more often then I think though as I don't realise unless I wake myself up obviously, but I have dreams a lot. When I have other people sleep in my room they wonder what I'm doing. I have had minor night terrors and a few episodes of sleepwalking when I was younger but this is different and started when I was around 13. I also scream out really loudly, as I am being murdered in my dreams, and this is what it sounds like according to my mother. I also swear repeatedly. Surprised nobody has called the police at night... Sometimes I wake up sitting up and recognise I was acting out my dreams and then begin hallucinating things from my dream, often continuing to run away from them as I'm not sure if I'm still dreaming or not. Which is not really a typical symptom... so I'm not entirely sure what I have but I will find out soon.
Nov 06, 2011
 I can relate
by: April in AZ

30 and just diagnosed myself. I know that I've had it for many years. I don't get out of bed with RBD good thing because I'm disabled. I think the spinal cord tumor that got me in a wheelchair as a teen likely triggered the RBD it has progressed some I think I don't think I had running/dancing episodes early on.
Jan 04, 2012
 Re-ellis
by: Sheri Leonard

Ellis,
I do think it would be a good idea to see a sleep doctor for an accurate diagnosis of RBD. To me it sounds like it.
Hope you've found what you're looking for, an answer by the time you read this.
If not then please seek the advice of a doctor trained to deal with RBD.

To the mother with the child-it is not common for a child to have RBD at that age but I did and it can be possible. I would suggest a visit to a sleep doctor. I hope your child has been helped since the last time you posted. I know all to well what it's like being that young and having these episodes. My family always thought they were funny and would use them as fodder for holiday gatherings. Although, not to funny to me! :) Try not to do that as a parent :)

To the others-if you think you have RBD see a doctor. Hope some of you on here have found your peace. I recently kicked my husband off the bed during an RBD episode and kicked him so hard I knocked the air out of him. One thing to remember about RBD is that during an episode you will be much stronger than you are awake. I'm superwoman when I have mine and if you are not under treatment for it and think you have RBD you could inflict serious damage to the one sleeping next to you. Remove all guns and weapons from the bed room. Sleep with your bed next to the wall ( your side of course) so you will kick the wall and not fall out of bed or kick your partner. Make sure their side of the bed is facing the door so they can get away from you if you become violent. My husband has had to leave the bed a a result of it.
This is not something to play around with.
Seek help for it asap if you think you have it.

SL
Jan 07, 2012
 HI
by: Anonymous

Hi Sheri thank you for sharing your story. I can identify a lot with it. I amin my forties but have had episodes of rbd on and off since my twenties. I have done and said all sorts to my husband. Although I dont act out my dreams I am realising that its when I have really vivid dreams that is usually when I have done or said something. Mine seems to be stress related as thats when its worse. I was taking clonazapem which had worked but now seems to have stopped working. I'm going to make another appointment with my doctor but she doesnt know anything about sleep related things. I'm hoping she will ask at the sleep clinic I went to who recommended the clonazapem in the first place. You're right it would be good if there was other medication. I wouldnt care what it was as I cant handle this any more. My husband is very good about it but that sometimes feels worse than if he got annoyed about it. Anyway its good to speak to someone who actually knows what I'm talking about as you're right it seems to be really hard to find anything much on the internet.
Jan 07, 2012
 Hi Sheri
by: Anonymous

Hi tried to post this earlier but it didnt seem to work so apologies if 2 things pop up. I just wanted to thank you for writing your story as its hard to find anyone who knows what its like to have the rbd. I'm in my forties and have had it on and off for years it seems to get worse when things are stressful. I've had clonazapem for years but it doesnt seem to be working now and I'm regularly saying things and hitting my husband in my sleep. I cant handle it anymore as although sometimes I might be thinking those thngs other times its not. I dont act out my dreams but I've realised when I've had vivid dreams even though theres no connection thats when I've been doing stuff in my sleep. I would love to know if there is any medication that is any more effective. It is good to know that I'm not the only person that does this though
Jan 07, 2012
 similar problem
by: Lyn

Where can I get more info on this. Is their a facebook site?
Apr 05, 2012
 response to most recent comments
by: Sheri

To the most recent comments:
There is other medication for RBD but I'm unsure if it can be used alone and without Klonopin.
Saw my sleep doctor several weeks ago and I had asked about other medications since I'm uncomfortable being on the Klonopin although it works it is a benzo. I was told Neurotin has been used to treat RBD and considering my episodes have overcome the medication I may have to use both in the future to prevent future episodes. With this advice from my doctor I suggest you mention Neurotin to your doctor-if you're seeing one who treats RBD. If you are not you need to find a sleep specialist, if that person cannot treat you or has not seen an RBD patient before then ask for a referral to one who has experience. Seeing a GP for this isn't a good idea as they know next to nothing about this disorder.

As for a FB page-I have not found one but did create a FB page around 2 years ago for research purposes and as a support group for those suffering from RBD. However, I was the only member! There needs to be a support group for RBD-that is specific to RBD. There are too many of us that are left hanging by a thread.

Self diagnosing is one of the most dangerous things anyone can do and I really cannot stress the importance of seeing a doctor who is a sleep doctor who deals with sleeping disorders for an accurate diagnosis.

Hope this has helped and I also hope that some of you have gotten help since leaving the comments.

:)

S.
Apr 16, 2012
 Also suffer
by: Chelle

Hi, i am 25 year old female and was formally diagnosed today with RBD. Suffered from night terroes as a child, started again when I was 17. Got so bad with hurting myself and my boyfriedn I was forced to seek help. So glad to hear of other younger sufferers, to know that I am not alone !
Jun 04, 2012
 Re comment
by: Anonymous

Thanks Sherri
Jun 18, 2014
 Help
by: Anonymous

Hi there, I'm also a 28 years old female, I realise this post was from a while ago, but writing this on the odd chance for some advice. Firstly, I've experienced some odd dreaming behaviour since young, such as thinking I'm awake and seeing shadows of objects etc when I'm obviously still asleep. A few months ago my husband had woke me up on A few occasions saying that I had been screaming and attacking in my sleep, I could not remover any of this when I came round. The most recent was last night, I dreamed there was a bee hive above my bed, it was so real that I jumped out of bed screaming and ran out the room, I can't remember if I fell or banged into the door frame but Ive hurt my leg and arm in the process which are both covered in bruises. I'm worried because at this point it was just me and my daughter in the house. I'm scared I will injure myself again if this happens. I have not been to see a doctor yet as this does not happen every night and I thought I could possibly just be stressed.
Oct 15, 2014
 Diagnosed with RBD at 31
by: Jeff


I am glad to have found this site. I have just been diagnosed with RBD and mild sleep apnea at the age of 31. My doctor told me that these two should be treated simultaneously because treating one will only allow the other to still occur, which will still disrupt my sleep. I do not stop breathing, but my oxygen is so shallow at times that is shocks my brain to wake me up. I don't even snore. I am not terribly overweight, so the apnea was a shock to me, my partner, and the doctor. Add RBD on top of apnea; then you have a recipe for sleeping very poorly (as I do).

I too have had many nights of waking up screaming, cursing, and occasionally hitting. I only recall sleepwalking a couple of times; including one time when I woke up speaking to my humidifier and another time standing at the foot of my bed talking to my partner about the cable guy being late. My dreams are very vivid most of the time. I remember having these episodes since I was a young child. It has become increasingly worse over the past couple of years (I believe due to work stress) and has made me miss a lot of work due to being sleep deprived. That is why I finally sought professional help. After my sleep study confirmed it, my doctor has put me on .5mg of klonopin as well as setting me up for a CPAP machine in the coming weeks.

I am hoping this fixes the issues, but I understand that I will likely be battling this for the rest of my life. Good news is that I can get rid of the CPAP after losing a few pounds (most likely).

I started the medication last night and I believe it did help. I remember dreaming, but never waking up from them. I did wake up from 2:15-3:30, but I believe it was due to the breathing problems. After adding the CPAP to my sleep routine, I am hoping this allows me some restful sleep.

The scariest thing to me is the link between RBD and Parkinson's Disease. As my doctor told me, "You will remember this consultation for the rest of your life." Although he said it would be highly unlikely that I develop Parkinson's, all other studies I have read on the internet say otherwise. That absolutely terrifies me.

I agree with your initial write up. There needs to be more studies on younger adults having RBD. Most I have found focuses on adults 50 years or older.

Again, thank you for starting this thread. Good luck to you and to us all!
Oct 26, 2014
 I can relate
by: Anonymous

Hi,
I haven't been diagnosed with RBD but when I read your story, I could totally relate!! I have almost nightly incidences, where I am acting out dreams or having night terrors (jumping out of bed, screaming, trying to get away from shadows or 'other things')' sometimes I remember what the terrors are and sometimes I dont. I've had episodes where I've cleaned everything off my side table, attacked my lamp etc. woken my partner because I needed them to take something from me or give them something or check them to see if they are wearing things (I am obviously dreaming about these things but are unaware I act them out) or just talking and acting out other parts of my dreams (writing on the wall) and I don't remember doing ANY of it...it's quite scary. I only know what I do because my partner tells me or asks me "do you remember what you did last night?"...or "Do you remember what you did to me last night?"...I feel SO bad and I'm afraid of what I will do :( I don't want to hurt my partner during one of these episodes. I have done a home sleep study for apnea but all they told me, was I didn't have apnea :/
Nov 17, 2014
 My sleep story (please read)
by: Devin

I'm 20 years old and I seem to be talking in my sleep while I think I'm awake. Today was the first time I moved during my sleep because I thought my family dog was in the bed with me by me and I acted like I was petting him but he was not there. The same night(last night) I dreamed that there was a shadow next to me and I closed my eyes just like you. And then I thought my family woke the kids up to go to school but a few hours later I woke up and they actually were getting ready for school. the worst part is I always think I'm awake and I'll dream about past child hood memories and old friends and I think my eyes are open because I'll look in my room towards my door and I'll see things. Luckily I haven't gotten violent except for yelling not very loudly but louder than talking and normal talking and slight movement. It doesn't happen every night but usually when I don't get more then 8 hours of sleep. I also have bipolar disorder so I don't know if that place a part in it. Thank you for your story it scares me because I already have many problems and I don't want it to manifest further because I already have problems staying here and a lot of disorders myself adding on to this new one. ,,,
Dec 19, 2014
 You're NOT alone.
by: Annette

I've had night terrors like that since I was a child. I've always woke up tired, no one ever addressed this. Now at 49 I've been dx with RBD. your story helped me. Everyone I've ever told about this thought I was crazy or making it up. Would love to connect with you if you would like to here's my address: purpleclown520@yahoo.com.

Thanks for your story.

Annette
Sep 21, 2015
 Same problem
by: Bill

I am a senior at age 72. I have been struggling with this disorder for many years. I went to sleep specialist and did the sleep study. I was told that I had sleep apnea and I was put on a C-pap and klonipin. At first I thought that I had found the cure. After a few months I started having episodes again, only now I was throwing the C-pap machine on the floor and getting tangled in hoses! I have had a few more sleep studies and all they want to concentrate on is the sleep apnea when my real frustration is the RBD. I can at the point now that I want a doctor that will give the meds that will knock me unconscious for 8hrs and another that will keep me wide awake during the day! I am so frustrated with feeling fatigued all the time.
Jul 13, 2016
 Cuddling with Bugs
by: Kaylee

So I'm unsure if I have RBD, but I've been reading about people's experiences on here. I'm 17, but I can remember experiencing symptoms at the age of 5. Most of the time, I will dream that there is a giant spider crawling in the blankets and I will shove all of the covers off of me and frantically crawl to the other side of the bed, once I ran across the room to turn the light on. When my 2 year old brother was still a baby, I would wake up in the middle of the night and search the blankets while crying hysterically for him, I even recall moving my mattress partially off of the bedframe because I was afraid he was suffocating in them. I've even smacked my mother in the face once and then tried to hand her some tea that she had apparently ordered. (lol)
Dec 19, 2016
 sleep trouble NEW
by: Dan

I too have problems sleeping. I have tried watching tv and listening to music but I usually cant get to sleep until after 4pm. Sometimes when I get really anxious i go down stairs and check out http://bestelectricskateboardguide.com/10-best-self-balance-board-reviews/ online until I start feeling tired again
Dec 23, 2016
 39 yr old female NEW
by: Anonymous

about 6 months ago i moved in with my family and i really dont like being here. i have been under extreme stress for over a yr and now have panic attacks from my anxiety related to my bipolar disorder. i have always talked in my sleep and when i was younger i ground my teeth hard. i had a sleep study last yr and everything was fine and now its not. after i moved in with my family where its crowded and dirty and stressful and everyone uses everyone else. i hate it here. and after i moved in i started talking and yelling and then it proceeded to knocking things off my end table and the stuff still stacked next to my bed. and then it progressed more and i end up on the floor a few times which wakes me and i know its from my dream bc i remember it completely. the last time i broke a couple ribs. i am just starting the med with ironically i already had for my anxiety i just never took it at bedtime before. now i have to do another sleep study bc its not absolute yet just an opinion on what i have. which i absolutely believe. and i have no family history of it or any neurological disorders. in fact i never heard of it before i did some of my own research about what was happening to me while i slept. im so scared for the future and what else it may lead to.
Jun 10, 2017
 RDB - Support NEW
by: Irene Pedley - England

Hi

My husband was diagnosed with RDB a couple of years ago. Although, it has been going on for the last 4 years.

It has been a bumpy ride - at times sleeping separately but other times sleeping together. We have been married 40 yrs. Even when he sleeps in another bedroom I still can't sleep as when he has slept alone he has injured himself. Therefore, I prefer to sleep with him as I now so attuned to his movements. He was on Clonazepam but recently changed this to Melatonin as the Clonazepam was making him very sleepy. I just worry about the long-term effects of this parasomnia - Parkinsons versus Lewy Body. I feel that there should be a Support Group for spouses who can share stories and not feel so alone.
Oct 11, 2017
 Support Groups anywhere ? NEW
by: Rob - England

I've discovered this site, whilst looking to see if there are any support groups for this condition.

I've had it for a few years now, initially, when I woke I was very aware of what I had been dreaming about, and actions in the dream exactly matched what I'd been doing in real life.

But more recently, it's changed, my partner feels I am becoming more violent in my actions, and where as in the early days she was aware when I started to twitch and would wake me - now she says I launch straight into strong violent movements, she doesn't have time to wake me and I am harder to wake. When I wake, I have no recollection of the dream. It's very different to how it was.

Does the condition progress like that ?
Are there any support groups ? (in UK?).

I think sufferers and their partners would benefit from some sort of networking.
Apr 04, 2018
 Support Group NEW
by: AL

Hello Everyone I am 27yrs old and just recently started to notice some of this behavior and my wife is starting to become scared. About 3 times in one night I jumped to the end of the bed claiming to catch my daughter who wasn't in the bed to begin with. I noticed there was no support groups so I have decided to start my own. Download the groupme app and search for "rbd support group"

My name is AL and I can't wait to connect with you all.
Apr 04, 2018
 Support Group NEW
by: AL

I noticed that you can't search groups in groupme so I decided to make a private group on fb so please send your Facebook info to my email @ alamb6655@gmail.com so I can send you an invite. I hope to see you there so we can encourage one another on this journey.
Apr 18, 2018
 Also a sufferer NEW
by: Craig

So happy I stumbled upon this group. I've always felt alone with this condition. It has cost me a couple of relationships as I've choked partners in my sleep before with no recollection of doing so.

It started about ten years ago in my mid twenties and online research has only given me information about the condition relating to older men. I'm relieved to read I'm not the only younger person with the condition. I was drinking quite a bit alluring those years and do think that alcohol exacerbates the symptoms. They have subsided somewhat with a healthier lifestyle and the use of clonazepam.

As with others here I am concerned about Parkinson's disease later on in life.
Jul 30, 2019
 I have both as well...
by: Brad

To make this short, you are not alone. I am 43 and know that RBD is at least 2 years old. I am a big guy, and when I fight in my dreams, I fight hard. I gave my wife bruises that lasted 3 weeks. I have run across a bed only to wake up when my face hits the wall. I grabbed my night stand (40 pounds) and threw it to the end of the bed, breaking the TV. I have kicked a very heavy ottoman several feet. Until last Friday, not a single doctor believed I had em. It literally took buying a security camera and forcing the nurse to watch videos to prove it to them. The current rate is at least 1 episode a night.

I started planning a trip to Ireland today. I want to go before whatever hell this leads to makes it impossible. But I'm alone and can't risk a flight that long. I may beat the crap out of the person next to me and get locked up because I can't control this.

No, you are not alone. Having both is a nightmare that you can't wake from. I hope the Klonopin continues to help you!
Sep 30, 2019
 Grueling exhaustion and REM Behavior Disorder
by: Sarah

My job became very stressful for a period of time and I was acting out dreams. My body would hurt in the morning, stiff and sore, and I felt as though I never slept. My memory lapses were incredible. I told people they could have my things and never remember those conversations. Lost things constantly. So very very fatigued ...dead tired. List 3 months of my life because I could not hardly function from fatigue. Then I saw Mayo's sleep clinic amongst many other depts to find why I had huge range of symptoms. I'm 38 and finally have a diagnosis. Fibromyalgia and REM sleep behavior disorder and non-rem parasomnia. My muscles don't relax. Started Klonopin. It feels like a miracle has occurred. I have energy. I can run again. I can work again. I cannot believe how this condition can lead to sleep deprivation. Thank God for Mayo.
Sep 30, 2019
 Grueling exhaustion and REM Behavior Disorder NEW
by: Sarah

My job became very stressful for a period of time and I was acting out dreams. My body would hurt in the morning, stiff and sore, and I felt as though I never slept. My memory lapses were incredible. I told people they could have my things and never remember those conversations. Lost things constantly. So very very fatigued ...dead tired. List 3 months of my life because I could not hardly function from fatigue. Then I saw Mayo's sleep clinic amongst many other depts to find why I had huge range of symptoms. I'm 38 and finally have a diagnosis. Fibromyalgia and REM sleep behavior disorder and non-rem parasomnia. My muscles don't relax. Started Klonopin. It feels like a miracle has occurred. I have energy. I can run again. I can work again. I cannot believe how this condition can lead to sleep deprivation. Thank God for Mayo.

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