Sorry for the slow reply. At this point I've been using CPAP religously for over 2 years. If the CPAP machine data is correct, I tend to average about 1/2 an event per hour while using it and am able to tolerate the use effectively all night long. I continue to physically act out my dreams but it continues to be far less frequent than prior to using CPAP (once every month or two). Although, strangely, I had an entire week in back in April with significant enactments (all directly correlated to easlily recalled dream events). During this week it happened every night. Nothing since. Cannot explain that.
I, like you, remain very concerned about the long term. We are lucky in that we live nearby Boston, MA which has some of the greatest healthcare providers in the world. I was waiting for my insurance to changeover which it has now (Medicare as of February) so I have a To Do list item to contact the group at Massachusetts General Hospital that specializes in RBD. In the meantime, at age 65 I continue to do everything I can which includes maintaiing a very healthy lifestyle just as I have for many years (long distance runner, biker, athletics almost daily), take no medications, maintain a very healthy diet. I figure maintaining a high level of fitness and establishing a relationship with a healthcare provider that understands RBD is about all I can do.
-Matt
biguglygremlin,
What is this "tool" that you feel you discovered too late?
Hi. It looked like these more recent posts/replies are only a couple of months old so I thought I'd chime in. I am 63 years young. I am very fit (I am a runner - run several times a week), not overweight and eat really well (wife and daughter are nutritionists). Although I have never been diagnosed, it is pretty clear to my wife and I that I have RBD. My wife reports I show all the behaviors. I have vivid dreams which typically require me to physically act to defend or protect myself which I act out physically while asleep. I can always clearly recite the dream specifics if asked right after awakening. Not knowing better it was kind of a family joke that I acted out my dreams. My wife and I finally had to adjust our sleeping arrangements from a king to 2 separate twins (within the same king frame) to help protect my wife. It has actually worked pretty well as both twins get their own sheets/blankets which greatly limits my ability to hit her.
So we've lived with this for several years until last summer when I fell out of bed during an episode. This was a first and it happened twice in one week. In addition to scaring my wife I really banged my head when I hit the floor. So I met with my primary care MD who referred me to the sleep center at a near by medical center. While waiting for that appointment I did a bunch of reading which is pretty scary as it sounds like many experts agree that RBD frequently leads to horrible neurological diseases. The sleep MD I finally met with said it might just be pseudo RBD and ordered a sleep study. Unfortunately I had really rough night with very little sleep the night of the sleep study. I was told they saw no RBD but the study indicated I had moderate sleep apnea (22 events per hour) so she prescribed CPAP.
At this point I've been on CPAP for 4 months. Prior to CPAP I was having at least 2 significant RBD events per week (according to my wife). Since starting CPAP that has dropped a lot. Maybe once or twice per month. Its difficult to know how accurate that might be but I can't argue with the fact that I've had fewer events. RBD still remains this scary thing lurking out there for me. I'd love to meet with an MD that really understands it. Thank you so much for the reference to the RBD organization above. I registered and will be reading through their web site.
p.s. Any chance anyone knows of an online forum for people with RBD?
