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Restless Leg Syndrome

Sleep Health | Last Active: Apr 1, 2023 | Replies (268)

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@suecreader

So, your sisters were helped by Vitamin D too? You're so right about the anecdotal evidence not being considered - I think doctors stick to the adage "it's not scientifically based evidence." that's why your post is so valuable . . . . . just like the thalamus connection whereby it doesn't work for me to do the CBT approach recommended by Rochester (for people with insomnia--and RLS is NOT the same as insomnia ....as I keep telling people who have the latter). In CBT, people are supposed to have quiet time before bed, no blue lights from TV or other devices, if unable to sleep, get up and do something boring and not at all stimulating. However, I've tried this approach for six months, and it never worked as my RLS just got worse if I tried to read a dull or dry book or do a crossword. With the thalamus connection, the representative from Relaxis indicated that the thalamus needs to stay busy -- so, after walking two-three hours and being even more exhausted, sometimes laying down (if my RLS let me) and watching TV allowed me to drift off to sleep. He also recommended listening to something that would be engaging like rock music via headphones . . . . that has worked for some people as told by him (again anecdotal evidence). Thanks for more detail about your story . . . I already take 2000 mg of Vit D but will increase that if Neupro stops working. I don't like to add too much at one time since then it is hard to tell which approach is the one that is most successful.

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Replies to "So, your sisters were helped by Vitamin D too? You're so right about the anecdotal evidence..."

@suecreader I understand your reluctance to muddy the waters with multiple approaches to control RLS. If you find Neupro stops working, try doubling your Vit D. I found immediate relieve that very night that I started that regimen. Take it at bedtime. I hope you find relief.

I too did the CBT training for insomnia, unconnected to the RLS. I really did practice it for about 6 months but it just wasn't working. I have found using a Kindle for reading, with the light on the kindle at about half power and the room lights off makes me really, really sleepy. Not that I can always fall asleep when this happens but maybe it is helping me not be wide awake. I cannot imagine having headphones on, playing rock music would ever help me fall asleep. I do best in total quiet and often wear earplugs as well.