Guest guest Posted October 28, 1998 Report Share Posted October 28, 1998 I have a question....and I'm too busy (yea, you can translate that to " too lazy " ) to look it up, myself. What I'm wondering is about the differences between medicines in terms of ones you have to take constantly, whether you feel the need or not, versus ones which can be taken as needed, either to help you through an ongoing or potential RLS attack (such as when you go to the movies), or to help get to sleep after an attack begins. Jill, ..I take Sinemet daily. My RLS is everyday, not intermittently. I take Sinemet on a regular basis, usually, at 9:00, then another time release Sinemet, just before I go to bed. Letting the legs start, is the worst thing that I could do. Before I started on Meds, my legs would bother me every so often maybe every other night, or maybe every night, but, there was always something that I could do to make it through, and they would stop. They don't stop now, and it is everynight. So, it is a regiment for me to take it on time. I also know, never to over do on the medicine, and not to take any during the day, unless I am on a long bus trip, car, or plane trip. But.......the amount has to count toward what I take at night, so that cuts that amount down. No more than 300 mg. per 24 hours. Doreen 63, Birmingham Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1998 Report Share Posted October 28, 1998 In a message dated 10/28/98 10:38:42 PM Central Standard Time, gunzel@... writes: << Okay, so...correct me if I'm wrong. You're saying that Sinimet is a drug you can take " as needed...but not to exceed a certain daily dose " ? But just happen to take it daily, due to your condition? Could a person use it today, and not again for five days, and still be using it correctly? >> Jill, I can only speak for Sinemet, but the doctor told me, to be sure to take them before the legs started, because once they did, then it took longer for them to quiet down, and I have found this to be true. They can go into a fit, if I wait to take my pill. Doreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1998 Report Share Posted October 28, 1998 In a message dated 98-10-29 02:08:19 EST, you write: << Okay, so...correct me if I'm wrong. You're saying that Sinimet is a drug you can take " as needed...but not to exceed a certain daily dose " ? But just happen to take it daily, due to your condition? Could a person use it today, and not again for five days, and still be using it correctly? Jill >> Thats what I've been doing. I was having terrible problems w/ rebounding and augmentation since my neurologist said take more = feel better, which was wrong. I stopped taking everything for 2 weeks, and faired better than when i was rebounding... but much worse than when the sinemet was working. Since I have no health ins., and am under employed... I didnt have the option of new meds, so I started to take the sinemet again as needed at night, which turns out to be every night. Now I take a half 25/100 when my PLMD gets uncomfortable, then half a permax .25 before bed ( free samples ). I have RLS on/off all times of the day now... its the PLMD I can't stand. But this week has been a good one for me, I've only been kicking bad for about an hour each night, and have been getting a good 4 or 5 hours of sleep each night. Andy 36, Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1998 Report Share Posted October 28, 1998 I have a question....and I'm too busy (yea, you can translate that to " too lazy " ) to look it up, myself. What I'm wondering is about the differences between medicines in terms of ones you have to take constantly, whether you feel the need or not, versus ones which can be taken as needed, either to help you through an ongoing or potential RLS attack (such as when you go to the movies), or to help get to sleep after an attack begins. I'd like to just have a quick references to all or most of the drugs we've talked about in the group...maybe just a list, like: Legbegonimet..take as needed Sleepwellipex...have to take daily, whether you need it or not Nervrackonin....take daily (and give two to your sleeping partner) Get the picture? While we're at it....I'd like to know if there are terms that differentiate the two types of meds..those that can be taken as needed vs those that are taken constantly. Maybe I could converse more intelligently about these, if I knew the terms. And I guess another question would be...is there a preference of one type over another? Does one work better? Or do people prefer prevention vs " crisis intervention " when it comes to meds and RLS? I'm not sure WHY the heck I'm asking this latter stuff, but it's been on my mind and thought it would make an interesting discussion. And I think some of this applies to alternative treatments, too. I hear that some people do their heel lifts religiously every night. Not me. I pretend I won't need help, and then go to bat when the RLS strikes. I'm not sure that's such a great plan...but hey, it's me. There I go...writing out loud. Another long letter. Here are the questions...so you don't have to reread. Feel free to answer one, more, or none. 1. Are there terms to differentiate meds that are taken as needed vs those that have to be taken constantly? 2. Which of our RLS meds are taken as needed and which have to be taken all the time? 3. Do you prefer treatments that are preventative or treatments that work at the problem only when it rears it's head? And let's throw ONE more in, for good measure: 4. Is it correct to assume that any med that is taken continually or constantly, must be stopped slowly? Okay...that's enough. Have at it, folks. Jill, 46 Payson, AZ http://www.netzone.com/~gunzel/rls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1998 Report Share Posted October 28, 1998 Hi all, If I don't take my Sinemet, I will be awake all night. That is not so bad, but then I twirl and twitch and stretch and do all the gymnastics, not able to sit or even stand still.I know, I take drug holidays,(like drug Xmas and drug halloween, I dress my sinemet like a witch) My max is 50/200mg per 24 hrs.When an attack comes on an inconvenient (?) time I take a 50/12.5 NOT timereleased and under the tongue, for the fastest profit. ( I tried to push it i.v. but my skin is too tough) A medicin website might be a good idea, but any volunteer could do that.It needs a new page and some managing time . Maybe a " sub-executive " ? Let us see what the sleep logs expose, and talk again, Marleen Jill Gunzel wrote: > > > I have a question....and I'm too busy (yea, you can translate that to " too > lazy " ) to look it up, myself. What I'm wondering is about the differences > between medicines in terms of ones you have to take constantly, whether you > feel the need or not, versus ones which can be taken as needed, either to > help you through an ongoing or potential RLS attack (such as when you go to > the movies), or to help get to sleep after an attack begins. > > I'd like to just have a quick references to all or most of the drugs we've > talked about in the group...maybe just a list, like: > Legbegonimet..take as needed > Sleepwellipex...have to take daily, whether you need it or not > Nervrackonin....take daily (and give two to your sleeping partner) > > Get the picture? > > While we're at it....I'd like to know if there are terms that differentiate > the two types of meds..those that can be taken as needed vs those that are > taken constantly. Maybe I could converse more intelligently about these, > if I knew the terms. > > And I guess another question would be...is there a preference of one type > over another? Does one work better? Or do people prefer prevention vs > " crisis intervention " when it comes to meds and RLS? > > I'm not sure WHY the heck I'm asking this latter stuff, but it's been on my > mind and thought it would make an interesting discussion. And I think some > of this applies to alternative treatments, too. I hear that some people do > their heel lifts religiously every night. Not me. I pretend I won't need > help, and then go to bat when the RLS strikes. I'm not sure that's such a > great plan...but hey, it's me. > > There I go...writing out loud. Another long letter. Here are the > questions...so you don't have to reread. Feel free to answer one, more, or > none. > > 1. Are there terms to differentiate meds that are taken as needed vs those > that have to be taken constantly? > > 2. Which of our RLS meds are taken as needed and which have to be taken > all the time? > > 3. Do you prefer treatments that are preventative or treatments that work > at the problem only when it rears it's head? > > And let's throw ONE more in, for good measure: > 4. Is it correct to assume that any med that is taken continually or > constantly, must be stopped slowly? > > Okay...that's enough. Have at it, folks. > > Jill, 46 > Payson, AZ > http://www.netzone.com/~gunzel/rls.html > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1998 Report Share Posted October 29, 1998 In a message dated 10/29/98 9:10:58 AM Central Standard Time, gunzel@... writes: << Okay, Doreen. Now THIS is interesting. Keep an eye on the discussions in the group and let's see what develops. I think you are describing YOUR approach to medicines and YOUR own reasons (which maybe be the same for MANY, even the majority, of the people in the group), but I don't think they are the same for " most " people. I really don't. I disagree respectfully...knowing I may be very wrong, here. I'm going to be listening closely to this discussion, because I think it will tell us all something else about how we are coming from different places and looking for different types of treatments. >> Dear Group, Jill's response to my telling about sinemet, is why I don't respond very much. I'm tired of being the chosen one to be ridiculed by her, over most everything that I say. If Jill is the only WORD on this Cyberspace, then fine, I won't respond. But, I really thought that we all had a say in things, particularly since a question was posed, and I tried to answer it, concerning Sinemet, and the different ways that I take it based on conditions at the time. Unfortunately, AGAIN, I have responded to someone who doesn't want to hear from me. Yes, Jill, you listen closely, to everyone, but you won't hear again from me. Doreen, 63, Birmingham Quote Link to comment Share on other sites More sharing options...
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