[strangesleeper]

Hi im a 22 yr old male with RBD

I was diagnosed with RBD at 20 with a history of ADHD and stimulant abuse, it comes on most when i am overtired or had a few drinks. I run a catering company now at 22, work long hours and often feel drowsy, and unmotivated during the day, most likely because of how active i am in my sleep. Thinking back as a teenager on dexamphetamine i continually had issues with insomia, and poor diet. The first significant rbd episode i can remember was when i was 15 i lauched myself out of the top of a double bunk bed and can vividly recall the enormous spider that was chasing me. As a child i was always a restless sleeper and had to wear a plate in my mouth to protect my teath from the severe grinding they got each night.

I saw a sleep specialist after i began attacking my fiance, initially it begain with verbal abuse, and the it escalated to either punching, kicking or grabbing her. I have apparently held entire conversations with my eyes open whilst i have been asleep, she rarely gets a full nights sleep. Sometimes the stories i wake up to are halarious, other mornings shocking. The most difficult thing to process is how out of character the behaviour gets. Its a scary insight she gets into my subconcious.

Couple of things i want to put out there

I tried clonazepan and the side effects according to my partner outweighed the benefiets. She said i was still very active at night, sometimes even worse. and in the mornings i was useless. I already suffer from an extremely poor memory, and the drugs just made far it worse. Im responsible for running a family and the clonazepan made this impossible

We then tried amytriptalyne and experienced a similar responce. It made little or no difference.

I was wondering if others had experienced similar side effects or no benefiets from the drugs above and had found something else that worked - for example i have recently read that melatonin can improve RBD.

The other thing i wanted to ask was about the link between RBD and Parkinsons or other neurodegenerative disorders such as dementia, and mutiple system atrophy. I have read a few studies and a couple of journal articles that outline a pretty strong link between RBD and these diseases and was wondering if anyone had any personal experience. Whilst i understand that the instances of RBD preceding parkinsons are more common in men over 60, im concerned that showing symptoms of RBD early on in life might make me more succeptable these conditions. The Mayo clinic study found that, now dont quote me, but i think its either 33% or 38% of subjects with RBD went on to develop parkinsons in an average of 11 years. I have an appointment with the specialist in Feb and will try and rememeber to cover all these points. Ill post the outcomes for anyone interested.

Thanks

[loosingit]

StrangeSleeper,

Hi. I wish I had some advice for you but all I can offer is that you're not alone. I'm having exactly the same problems you are and it's about to cost me my relationship. I love my partner and during the day that comes through loud and clear but at night I'm told I turn into a monster. I say the most awful things. I even punch and kick my partner. I awake in the morning completely unaware of what happened.

I like you had read that Melatonin can help. I have tried taking it every night now for over a month. At first the dreams / episodes seemed to go away but over time it seems to be becoming less effective. I take 3mg nightly.

I want to visit a sleep center but unfortunately right now I simply can't afford it. I lost my job about a year ago and started my own business then. It's paying the bills BARELY and with no insurance going to the doctor is simply not an option.

Good luck in your own search and please keep posting what you learn as there are others out there like me looking for answers.

[strangesleeper]

Hi Loosingit

Im a bit bummed to hear the melatonin stops working after a while. I just got started 3 weeks ago on it and whilst there have been one or two mild episodes nothing major. I know just how you feel re: relationship. One of the things my partner found really S*** was my inability to genuinely accept how serious what i was doing at night was. I found it hard to take responsibility for things i had no recolection of. My wife was as understanding as i could have expected her to be, and i do wish i had been more proactive about it in the start as i recognised that a big part of her hatred was over how little i was trying to fix it.

It does feel like a downward spiral. The RBD causes stress, the stress causes the RBD. Its like having split personality disorder in that i have no say, or choice in my behaviour at night.

If the melatonin wasnt prescribed do some research and make sure the melatonin is what it says it is. I read that a lot of over the counter supplements make false statements about how much melatonin is actually in them. Other than that, try and get some exersice, eat regular healthy meals and try and get more sleep (easily said than done, i know). I have always found that im much much worse when im tired.

Clonazepan supposedly works for 95% of sufferers, and then there are all the other hypnotics, but they seem to do more damage, and are definately not a healthy solution. Meditation may be a solution but some find that stupid, i have also read of people using hypnosis, but with no significant results.

I wouldnt bother spending money on a sleep study but if you can eventually afford to see a good doctor do so. But do as much research yourself first. From my understanding anything that can help increase the levels of dopamine in the brain, could in some way solve RBD. Levodopa - and other parkinsons treatments are another possible avenue. If the melatonin stops working the next option ill take is selegiline see [moderator note: website address has been removed]. Kind of in the same league as melatonin in that its a good all round drug even found to increase basic life expectancy, but im not an expert i can only go off what ive read.

Got to start work now,

good luck with your relationship,i really hope things pull together for you.

[KIMMYB]

I CAN TOTALLY UNDERSTAND WHERE YOU ARE COMMING FROM AND REALLY AT THIS POINT FOR ME ALL I CAN SAY IS REM DISORDER JUST SUCKS. I AM A 31 YEAR OLD FEMALE WHO DID HAVE A SLEEP WAKE STUDY TO BE DIAGNOSED. I ALWAYS KNEW SOMETHING WAS WEIRD AND THE ONLY THING THE STUDY DID WAS CONFIRM THAT I DO HAVE A DISORDER. I FEEL LIKE I HAVE TAKEN EVERY KIND OF DRUG OUT THERE FROM ANTI-DEP TO ANTI- SEIZURE MEDS AND REALLY EITHER THEY WORK FOR AWHILE OR THE SIDE EFFECTS ARE WORSE THAN THE DISORDER. CLOZPAM WORKED FOR AWHILE BUT IT IS NOT REALLY HELPING MUCH ANYMORE. I WAS ALSO WORRIED ABOUT THE LINK BETWEEN REM AND PARKINSONS SO I WENT TO A SPECIALIST AND THEY DID TESTING WHICH COULD ALEAST CONFIRM AT THIS POINT EVERYTHING IS NORMAL. I GUESS I REALLY THINK THESE DR'S CAN DIAGNOSE BUT REALLY HAVE NO TREATMENT. IT IS A COMPLICATED ISSUSE AS EACH PERSONS BRAIN CHEMESTRY IS DIFFERENT. WELL MAYBE THIS WILL HELP YOU IT HAS HELPED ME. I TAKE PROVIGAL DURING THE DAY. IT HELPS KEEP ME AWAKE SO I CAN DO MY JOB AND EVEN LIVE A HALFWAY NORMAL LIFE DURING THE DAY. I CAN TAKE EXTRA ON THE WEENENDS TO GIVE ME ENERY TO ENJOY LIFE ALITTLE. MY SLEEPING ISSUES AT NIGHT FEEL LIKE A HOPELESS ISSUE AT THIS POINT. I DO ALSO SUGGEST DOING RESEARCH ON YOUR OWN AND WATCH OUT FOR SOME OF THESE DR'S WHO GIVE YOU MEDS. SOMETIMES THEY OVER MEDICATE AND MAKE ISSUES WORSE. GOOD LUCK

[Tomas]

You wrote:

"Clonazepan supposedly works for 95% of sufferers, and then there are all the other hypnotics, but they seem to do more damage, and are definately not a healthy solution. Meditation may be a solution but some find that stupid, i have also read of people using hypnosis, but with no significant results. '

What are the negative side effects of Clonazepan and the other hypnotics? I don't have a formal diagnosis, but I've been exhibiting RBD symptoms for about 6 or 7 years. I sleep in a separate room from my spouse and sleep on the floor so I don't have far to fall!!! My Gen. Practitioner prescribed a lo dose of Clonazapan w/o a sleep study, but then a neurologist discontinued the script and I don't feel like going back to him anymore and I don't care to do a sleep study at all. And don't see the point, frankly, if the meds are worse than the condition.

[mik_12]

There is almost no research on RBD in young people. It is a huge gap in the literature and I believe there are many people out there with this disorder and therefore a really important opportunity for research. The only formal case I have read about is by Gregory Stores who had a patient with RBD that developed in his teens; at 20+ year follow up this person is still fine. More cases like this need to be published, as you are right, it is mostly with much older men.