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Stitches, Bruises and Cuts, Oh My

by Mary Lou
(Canada)

I am a 67 year old female with RBD. Am in excellent health other than this 'affliction'. Have had it for many years and just recently flew out of bed, hit a table and ended up in emerg with stitches. It is getting worse as time passes.

I am on Paxil and this has great exacerbated my RBD. But, what is worse, depression or RBD???? For me, depression is. I have tried many other anti-depressants but due to side effects etc. I have had to remain on Paxil. Am going to see a top neurologist who specializes in sleep disorders. Do so hope he can help me. Have to wait 6 months to see him.

I can't take clonzepam--side effects were unbearable. But, am now on melatonin and gabapentin--that somewhat helps. Now I tie myself securely in bed . I also have put pillows and padding on furniture I cannot not move. I do not eat anything spicy or too sweet after 6 and no alcohol. (yeah, that was hard)




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Stitches, Bruises and Cuts, Oh My

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Nov 25, 2010
 Best Wishes
by: Kevin Morton

Hey Mary Lou, thanks very much for sharing your story, and my sincerest best wishes to you.
Dec 06, 2010
 Thank you for sharing
by: Sheri Leonard

mary,
I'm so glad I found your story. I too am female, although younger ( 28 ) suffer from RBD and has has both RBD and night terrors and sleep walking ( NREM stage ) since a child.

How old were you when you were diagnosed?
do you know if you had it when you were a child. teenager, young adult?

I'm trying to find others who are as young as me with RBD and other females since there doesn't seem to be many that are afflicted.

My doctor wants to try me on melatonin with the klonopin if I do not want to up my dose and did mention paxil to me as well. I'm totally not sure where to go as far as meds are concerned but may give the melatonin a try since it has helped you.

again, thank you for sharing :)

Sheri.
Dec 06, 2010
 Hi Sheri
by: Mary Lou

Sheri:

I have had nightmares since I was a child. My RBD worsened as I got older. Before you start taking Paxil read articles on "Paxil and RBD". It often makes RBD much worse. I cannot take Klonapin (called clonazepam in Canada) as I took a severe reaction to it. I am now taking Gabapentin and melatonin. The melatonin really helps me. I also have to tie myself in bed.Also, I do not eat anything too spicy or sweet before going to bed. Sometimes, RBD leads to Parkinson's Disease. You should see a neurologist. This not too common so don't stress about it. Isn't this the weirdest condition. For a long time, I didn't tell my friends about it and when I did, I knew they thought I was making it up. After getting stitches, etc. they read about it. Very good articles on the internet. Would love to find a chat room on RBD. Not common in females. Good luck- contact me anytime.
Dec 06, 2010
 Hi Sheri
by: Mary Lou

Sheri:

I have had nightmares since I was a child. My RBD worsened as I got older. Before you start taking Paxil read articles on "Paxil and RBD". It often makes RBD much worse. I cannot take Klonapin (called clonazepam in Canada) as I took a severe reaction to it. I am now taking Gabapentin and melatonin. The melatonin really helps me. I also have to tie myself in bed.Also, I do not eat anything too spicy or sweet before going to bed. Sometimes, RBD leads to Parkinson's Disease. You should see a neurologist. This not too common so don't stress about it. Isn't this the weirdest condition. For a long time, I didn't tell my friends about it and when I did, I knew they thought I was making it up. After getting stitches, etc. they read about it. Very good articles on the internet. Would love to find a chat room on RBD. Not common in females. Good luck- contact me anytime.
Nov 09, 2011
 very concerned
by: judy

Hi my name is judy. I have been recently diagnosed with rem sleep disorder and the doctor has scared me to death. He said that people with rem sleep disorder usually get parkinsons or ms within 10 to 13 years after being diagnosed with rem sleep disorder. Has anyone out there had this happen to them. I am very concerned. thank you
Nov 10, 2011
 RBD and Parkinsons
by: Bob Norman

Since I've had RBD for about 15 years, I try to keep up on the most current research and information. The recent figure I heard was that roughly 60-70% of RBD patients end up with Parkinsons Disease (PD) or another neurodegenerative disorder (there are two or three others, but PD is by far the most often seen). The average time from recognized onset of RBD to onset of PD is now generally accepted to be in the 15 year range, but some much longer cases have been reported. My hope and belief is that by taking the best possible care of myself (healthy diet, supplementation, exercise, yoga, meditation...) I will be one of the minority that doesn't have RBD progress to PD. I wish you the best of luck in dealing with this in your life!

Bob
Nov 28, 2011
 scared to sleep NEW
by: Anonymous

I am a 64 year old female and I too have been diagnosed with rem sleep disorder. I am scared to death. This is a very hard thing to deal with.I wish that we could talk.You can email me if you like.judyepson@gmail.com Good luck. I will be praying for you.
Nov 28, 2011
 scared to sleep NEW
by: Anonymous

Thank you Bob for your comments. You said that you have had rem disorder for 15 years. How old were you when you were diagnosed? Did you realize that you had a sleep problem right away or did it take a few years to diagnose. It took me a long time to realize that I had a sleep problem. It seems to progress with time. Thank you.
Nov 28, 2011
 scared to sleep NEW
by: Anonymous

I am a 64 year old female and I too have been diagnosed with rem sleep disorder. I am scared to death. This is a very hard thing to deal with.I wish that we could talk.You can email me if you like.judyepson@gmail.com Good luck. I will be praying for you.

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