Monday, September 15, 2008

Melatonin for the Treatment of RBD

I first learned about the use of melatonin in the treatment of RBD in Dr. Carlos Schenck's book entitled "Sleep: The Mysteries, The Problems, And The Solutions". I literally ran to the computer and Google'd every combination of search terms involving RBD and melatonin I could think of. What I found was quite promising. But the truth is, just the fact that someone was talking about something other than Klonopin (Clonazepam) was enough to give me some much needed hope!
And the reason is this...

My Dad was put on Klonopin when he was first diagnosed. In fact, he was told it was a "absolute requirement". Initially the Klopin worked quite well, his RBD episodes decreased in intensity and frequency. But the problem was that over time his body had built-up a tolerance to it and the dose had to be continually increased. Fast forward to the time I learned about melatonin and let's just say my Dad was in BAD shape. The side effects of the increasingly higher doses of Klonopin were literally ruining his life. He was groggy, drowsy, fatigued, depressed, anxious, confused, shakey and showing blatant signs of ataxia (loss of balance & coordination). He was almost a shadow of the Dad I knew. I was beyond desperate to find an alternative.

It was at this time that I reviewed just about every website I had visited that mentioned RBD and sent out emails to everyone from the administrator of a sleep site I frequented to several health professionals. Finally someone replied and said they could put me in touch with Dr. Carlos Schenck himself! It was Christmas eve 2007 and I couldn't think of a better gift. I remember shaking when I got his email address and trying to compose an email to convey how badly I needed help without sounding like a nutcase!

Dr. Schenck replied with a referral to a specialist in our area and in answer to my question about the benefits of melatonin in the treatment of RBD (I was ready to start my Dad on it NOW!), he advised that we discuss the issue with the doctor.

Fast forward several weeks and we took my Dad to see that doctor and he literally changed my Dad's life, which you can read about here: There is Help... and Hope!

More can be read on the use of melatonin in the treatment of RBD here:

Melatonin Effects in a Patient with Severe REM Sleep Behavior Disorder

Melatonin Helps Alleviate Violent Sleep Disorder Symptoms

Melatonin for Treatment of REM Sleep Disorder in Neurologic Disorders

And also at Monika Woolsey's blog here:

Melatonin & REM Sleep Behavior Disorder

5 comments:

October said...

I am so glad to have found this entry.
I have always been a little active in my sleep, but over the past few months, it's gotten to the point where just about every night, several times a night, I will speak loudly and be physically active (and honestly, scare the lights out of my partner). If I was sleeping alone, I wouldn't be so worried. However, my boyfriend is being kept up by me physically acting out my dreams.
This morning, I woke to the sound of him calling to me, and I awoke so violently that I lurched hard and my back hit and hurt him. He said I slept like a maniac and kept him up all night... and that I was running in my sleep. That one worries me a lot. The past few months have become increasingly worse, and this is the last straw. I need to figure this out. He needs sleep, and I feel awful for keeping him awake and possibly endangering him in my sleep...
I did a bit of research today and it sounds like I have mild RBD. It is 5-7 nights a week, but I'm not terribly violent (punching, kicking- I just move a LOT, talk loudly and wake up several times, usually in the middle of speaking). I don't want it to get worse. I found Klonopin, but then I also found this blog, and from the sound of it, it isn't a great medication to stay on for long. I also heard about Melatonin helping.
I don't know, I'm just looking for somebody that has any idea what I'm dealing with that isn't a doctor at the moment. My case of this isn't nearly as severe are your father's, which is heart-wrenching, but I'm worried that there's the chance it could get to that over the years. I'm a nineteen-year-old girl, and I've been to a doctor for health reasons maybe twice in my life. I'm afraid a doctor will try to put me on medication for ADHD again, and every other thing mildly wrong with me. I don't want to rely on any kind of medication at all, really, but I would do anything to make sure my guy gets the rest he needs for work.
Is there anything you can tell me? Maybe it isn't even RBD, but I don't know how else to describe it...
Thank you for at least reading this. I appreciate it.

-October

rpda said...

I'm so glad you found this entry too. If for no other reason than to know you're not alone as I know how crazy-making getting the right diagnosis and treatment can be. Especially in the early stages.

I know you probably don't want to hear this, but I would strongly suggest having a sleep study done. It's imperative for the proper diagnosis. The fact you're only 19 and female doesn't fit the normal profile for RBD (it's typically males and age of onset is usually around 50), but if you do have it, you need to get treated a.s.a.p. I say this not to lecture you, but b/c I know how awful this is to deal with and the guilt that comes with possibly disturbing or hurting your partner is awful.

One of the main components of RBD is the violence. Early on, my Dad started with just flailing limbs and a vocal outbursts, but there was ALWAYS a violent dream associated with the behaviors that he was acting out. Even if he couldn't recall the specifics of the dream, he could always sense the panic, fear, terror, etc. upon wakening.

There are many sleep disorders that seem to mimic eachother or have things in common, so it's very possible you don't have RBD. But you really need to be seen by a sleep specialist. I would even suggest taking your boyfriend with you. Not just for moral support, but b/c he can tell them what you're doing in your sleep since he's witness to it.

Please let me know if there's anything I can do to help. And my best wishes to you for getting the help you deserve.

Charlie Bluefish said...

Thanks for your post. I am urging my fiance to see a doctor and get referred to a neurologist/ sleep specialist because recently he sleep-ran into a wall resulting in mild concussion and a very sore face. Last night, he woke me up twice urgently getting out of bed until I put the light on - this always seems to help him orientate himself and go back to sleep. He doesn't remember anything in the morning, because he is moving around while being asleep. He appears to be dreaming at the time and often speaks. It doesn't often go on for long since my intervention - when I am there - seems to work. Fortunately, some nights he sleeps more normally. His Dad is the same and so was his grandad apparently. I don't want to get hurt and I don't want him to get hurt and I want to sleep better next to him!!! But also I don't want him to have the same problems your Dad had with Clonazepam which is addictive and a tolerance is, I believe, inevitable, requiring higher doses and increasing side effects. I see it is not recommended for long-term useand yet is supposed to help 90% of those with RBD . I have used melatonin myself for jet lag (London to Alaska) and I was surprised how well I slept. I often have trouble getting to sleep (maybe I am worried about him having a 'start', but also I have always been a poor sleeper). Very tired today - it's horrible.

Anonymous said...

Dear October

My partner and I have been trying to establish the reason for her acting out during her sleep ( basically talking, shouting , jumping out of bed, looking through cupboards etc) It seems that she (28yrs old) has been going through a very similar pattern to your case.We have come across this blog and were wondering how the last few months have been for you and whether anything has improved your condition or whether you have received any advice which might help her.We are struggling to find a "sleep doctor" or somebody who actually understands what RBD is.

rpda said...

Dear anonymous,

Thank you for getting in touch. I can so empathize with your struggle to find a doctor who understands RBD and to get your partner help. When my Father was in the earliest stages of this disorder that is truly one of the greatest challenges we faced.

Long story short, I finally got in touch with Dr. Carlos Schenck from the University of Minnesota who I consider to be the authority on RBD. I asked him for a referral in our area (Los Angeles) and he recommended the doctor who has been successfully treating my Father for the past several years. If you tell me where you are located I would be happy to do the same for you. Or you can contact him yourself. Dr. Schenck's website is Parasomnias-RBD and it contains tons of information as well as his contact info.

Very recently my Father also took part in a patient conference at UCLA with Dr. Silber who is a renown neurologist and the co-director of the Center for Sleep Medicine at the Mayo Clinic's campus in Rochester. He was incredible and I would gladly contact him for a referral for your partner as well. His contact info can be found at Dr. Michael H. Silber.

I'm in the process of updating the blog and will share the details of this conference as well as my Father's condition at this time (which is very good I'm happy to report!).

I don't think I have to tell you how crucial it is to get the right help. I can't tell you how many doctors we saw and how many wrong turns they took us on. You MUST be proactive and do NOT give up. There IS help out there. And please know that I will try to help you and your partner find it in any way that I can.