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RBD - My Story

by Sheri Leonard
(Marietta, Georgia )

me!

me!

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.

Sheri Leonard

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,
Mar 30, 2011
 response to comment
by: Sheri Leonard

Thank you for your comment. My doctor too has suggested melatonin as well since I have told him I do not want to up my dose of Klonopin. The other medication I've not heard of but I'll mention it to him.

I was hoping there were others who were around my age who had read this and had the same thing...
:(

I'll check back in the next couple of months-so far you're the only one I've met that has it, online at least.

S.
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 were going through doctors now. iv slept in her room a number of times to keep an eye on her and iv woke up with her pulling me by my hair, or climbing up at the window screaming for help. she has also been stood in the door way looking like she is fighting and then falls to the floor and covers her head begging for (wat ever it is) to leave her alone, iv found her in her cupboard asleep and even sitting on her bed looking like she is squatting flies. if she falls asleep down stairs on the sofa i wake her and say off to bed she goes the other way and i ask her where she is going and she tells me shopping i can have full convo with her for about ten mins then she is with it. i can be watching tv an she is upstairs roaming about noone will stay over night with her as she scares people even her dads girl friend wont have her in the same room as she scared (lovely lady not) but the doctors have palmed me off for years saying its just sleep walking and terrors but i think its much more iv not got stair gates because my 4 year old i got them because my 11 year old has anyone got any advice how i can give her a normal life she cant sleep on bunk beds which she wants, she cant 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 NEW
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 NEW
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 NEW
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 NEW
by: Lyn

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

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