Living with REM Behavior Disorder

My story began almost 3 - years ago during the final stages of achieving menopause and while taking an anti-depressant drug called Lexapro.

I began by having more and more vivid dreams and “active” sleep (talking, mumbling). One night, I found that I had jumped out of bed banging into a dresser.

Since my husband is a chronic snorer, we agreed to sleep in separate rooms. During the first night, I awoke to find myself on the floor — I had been dreaming of doing a somersault and apparently, actually did just that — no real harm done but it was startling.

During this same time, I had been having a lot of trouble falling asleep - laying in bed 1 to 2 hours before succumbing. This particular night, I took one Tylenol PM which did help me to fall asleep. At about 7AM I was vividly dreaming of being in some kind of team game involving running on a field. It was a really delightful feeling — until I dived face-first off the bed and into a dresser causing a concussion and severe black-eye.

Coincidentally, a friend came to dinner the following night who has been treated for a neurological neuropathy disorder and also suffers from a leg movement disorder. He had, in his online readings, come upon REM Behavior Disorder and told me about it.

I saw an internist who referred me to a Boston-based sleep disorder specialist whose patient manner was so unprofessional that I elected not to see him again. I was then referred to a neurologist who also had never heard of the disorder but did some cursory research and prescribed clonapin (clonazapan). I underwent a sleep-deprived EEG, a full-sleep study, an MRI with and without contrast, and a PET scan. The MRI and PET revealed a “shadow” on my cerebellum which could not conclusively be linked to the sleep disorder (could have been there forever).

In the past 2 years, the dosage of clonapin has increased from .5mg to 1.5mg and my husband insisted on sleeping in the same bed to “keep a watch on me” for my safety. Sadly, his sleep is still interrupted nightly by mumbling, shouting, kicking, and punching so I don’t really believe that the clonapin makes that much of a difference.

I continue to get annual MRI’s and a neurological exam to watch for changes in the “shadow” or for signs of other neurological disorders like Parkinson’s disease. So far, there have been no changes to the MRI and I’ve passed the neuro exams.

I do find that my sense of balance is greatly diminished and a propensity for “clumsiness” is increasing. How this all relates to RSB disorder is unknown to both me and my physicians which is discouraging.

I would conclude by adding that my dad seems to have suffered also from the disorder and that I don’t hold out a lot of hope for a “cure” and just hope that it isn’t a sign of other more debilitating disorders to come.