Thanks for the welcome to the forum. I'm taking .62 ropinerol (2.5 tablets) around 8.30pm every night, I started with .25 six months ago and thought it was a miracle. I'm aware of augmentation so I don't want to increase it. Right now, about an hour before I'll take my dose, my legs are killing me but I don't really mind because I know I'll be able to sleep in three hours.
Now that I don't have symptoms until early morning I've had to relearn how to sleep. Luckily I read about a promising book in a newspaper about the same time that I started on ropinerol. I had to order the book from the UK (I also ordered one through Amazon for my sister in the US, I live in New Zealand.) The book is called "The Sleep Book", and was written by Guy Meadows, a sleep psychologist. He says in the book if you have a physical problem such as RLS it needs to be sorted out first. The book helped me get rid of all my disruptive insomnia-coping behaviours, I recommend it. I used to be up every two hours or less for at least an hour and had a lot of bad habits.
On a lighter note, people with WED never wake up with a stiff neck from sleeping too well!
Sleep Book
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ViewsAskew
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Re: Sleep Book
If you are up to .62 from .25, you may already have mild augmentation. Recent research is indicating that augmentation is slower and more insidious than most of us realize. Any dose increases after that first dose worked - that's likely augmentation.
Sounds like a good book! I think a lot of us get into weird habits because of the physical problem. But, then stopping those habits is hard.
Glad to have you here - though, as with all of us - I wish you didn't have to be.
Sounds like a good book! I think a lot of us get into weird habits because of the physical problem. But, then stopping those habits is hard.
Glad to have you here - though, as with all of us - I wish you didn't have to be.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Re: Sleep Book
It's really great to be part of the WED/RLS forum. My doctor is a GP, not a sleep specialist, but he is very open to learning about everything and supportive. He prescribed Clonazepam a few years ago but it didn't work at all. I knew about ropinerol but didn't know it was available in New Zealand until he suggested it. The instructions on the bottle said it could be increased by one tablet per week up to a maximum of four. My miracle wasn't 100% so over the first month I gradually increased up to the 2.5 tablets I'm on now. Being aware of augmentation, I didn't want to go higher. Would you recommend going back to two tablets? I don't mind some symptoms as I previously had them almost any time I had to sit for more than about ten minutes at a time (and of course, at night). I still can't sit for long but luckily I'm active and don't have TV. Using the computer at night can cause problems but I just get up and walk around, work standing or even kneeling at times.
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ViewsAskew
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Re: Sleep Book
Sounds like you were careful to increase it slowly - you may be fine. I just didn't want you to have started at .25, then moved to .5, then another one, etc.
That said, from what I can tell, it seems that most of us do best when our symptoms are "just about" covered. Having a bit of wiggling here and there is likely better for us that being completely covered. The reason, as I understand it, is that when you're completely covered, you may be over covered. And that is particularly bad with DAs and with opioids.
You could try to back off a half tab and see how bad it is. If it interferes significantly or interferes with sleep, definitely don't do it. If it's just a bit now and then, it might be worth it. Either way, you're still within the most recent suggested dosing (1 mg or less).
Rustsmith (moderator) is putting together a new set of guidelines to help people related to augmentation. We want to encourage anyone who uses a DA to determine their symptoms at the time they start, then to assess them every month after that. If there is ANY change, it's much better to catch it early than to wait. It sounds as if you are sort of doing this already - very smart!
That said, from what I can tell, it seems that most of us do best when our symptoms are "just about" covered. Having a bit of wiggling here and there is likely better for us that being completely covered. The reason, as I understand it, is that when you're completely covered, you may be over covered. And that is particularly bad with DAs and with opioids.
You could try to back off a half tab and see how bad it is. If it interferes significantly or interferes with sleep, definitely don't do it. If it's just a bit now and then, it might be worth it. Either way, you're still within the most recent suggested dosing (1 mg or less).
Rustsmith (moderator) is putting together a new set of guidelines to help people related to augmentation. We want to encourage anyone who uses a DA to determine their symptoms at the time they start, then to assess them every month after that. If there is ANY change, it's much better to catch it early than to wait. It sounds as if you are sort of doing this already - very smart!
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Re: Sleep Book
More about The Sleep Book.
There is a website and while interesting, it doesn't have a whole lot of information: http://www.thesleepschool.org
It says on the website "The struggle with sleeplessness prolongs and worsens insomnia.
We break this vicious cycle of Insomnia through our globally pioneering use of Acceptance & Commitment Therapy (ACT) & Mindfulness for chronic Insomnia."
It doesn't work while having symptoms but through the combination of medical science (ropinerol) and the techniques in this book I'm sleeping well for at least five to six hours a night although not all at once. I can cope with symptoms arising early in the morning by stretching for about ten minutes then going back to bed for a few hours. The stretching doesn't always work but i usually does.
There is a website and while interesting, it doesn't have a whole lot of information: http://www.thesleepschool.org
It says on the website "The struggle with sleeplessness prolongs and worsens insomnia.
We break this vicious cycle of Insomnia through our globally pioneering use of Acceptance & Commitment Therapy (ACT) & Mindfulness for chronic Insomnia."
It doesn't work while having symptoms but through the combination of medical science (ropinerol) and the techniques in this book I'm sleeping well for at least five to six hours a night although not all at once. I can cope with symptoms arising early in the morning by stretching for about ten minutes then going back to bed for a few hours. The stretching doesn't always work but i usually does.