I was diagnosed with RLS in 1998. I have been taking an increasing dose of Mirapex since then. I am now up to 3 1/2 - 1mg. tabs per day. My neurologist may add another drug at bedtime, along with mirapex.
I am so tired of RLS. I am always tired (I sleep about 4 hours a night), I am moody, I get depressed very easily, sex is a chore now, I look worn out and I look 10 years older than I am. Right now I am at work and can't concentrate.
I told my husband this morning the RLS has affected everything in my life.
Sorry, for my first visit to be so negative - I'm having a really bad day.
Always tired!
Always tired!
"Legs"
Hey, Legs--
Welcome aboard. So sorry it's such a tough day. Can't speak to the medication issues, but others here will.
Just wanted to say that yesterday I was REALLY frustrated and upset about my RLS, too. Even wrote a rude song and e-mailed it to some of my friends who also suffer from RLS.
I think we all get really fed-up and desperate sometimes! 
It's hard to have something like RLS, because the things you normally do with other conditions, like rest, to "take care of yourself", are some of the things RLS makes nearly impossible.
You hang in there!
Sara
Welcome aboard. So sorry it's such a tough day. Can't speak to the medication issues, but others here will.
Just wanted to say that yesterday I was REALLY frustrated and upset about my RLS, too. Even wrote a rude song and e-mailed it to some of my friends who also suffer from RLS.
I think we all get really fed-up and desperate sometimes!
It's hard to have something like RLS, because the things you normally do with other conditions, like rest, to "take care of yourself", are some of the things RLS makes nearly impossible.
You hang in there!
Sara
Hi Legs and Welcome
Hi Legs and Welcome.
Gosh, sounds to me like the truth in your post, not just negativity. That's good by me. Also, unless your wonderwoman, 4 hours of sleep a night is not much since 1998. Would be hard for me to function well.
From experience, I'm grumpy too when I'm not sleeping. Even mean at times when I'm in endless pain. There's little difference between when your suppose to be alert and working and when you should be sleeping. All that time runs into itself at some point. You might be depressed, but I think of it as hopelessness after that amount of time. For me it was the thought that nothing was going to change. Life events and chemical inbalance are what depression are made of. Take someone's sleep away for great extended periods of time, throw in some RLS and I found hopelesness. I'm a pretty decent person when I'm rested and not in pain. My bet is that most of us around here are the same way.
3 1/2 mg is a pretty good size dose. Do you spread it out at all throughout the day or is this all at bedtime? At this dose and after all this time, it could be part of the problem.
I'm no doctor, but I was up to 3 mg spreadout daily in the last 10 months or so that I took it.
It's possible that you may need a added medication. It's also possible that Mirapex is causing some insomnia, augmentation the next day or just rebound. At this dose for this long it would not be wise to stop taking it all at once. You would need to wean off, as this is one medication some of us here have had problems with Just Stopping and Weaning Off.
There is something called a drug holiday for those of us that have taken the same medication for a long time. This can be helpful. Many take pain medications for this small break, but I seriouly wouldn't recommend that to you unless you were coming down on the dose. Ann, may be better able to address this with you. She has just been trying to get off of Mirapex as of late. It's not been an easy task. As for adding another medication, there are many of us that use a combination of things to try and control the RLS.
Don't be so hard on yourself. There comes a time when you simply need some healing sleep. You can't run on 4 hours for years and still be who you use to be. Doesn't work that way. Sleep deprivation can slowly rob you of health and well being.
Your Quality of life counts just like anyone else. That's what changed my mind about how I wanted to deal with my 24/7/all my life RLS. I took the pain and sleep issue to the doc and said "we need to address these issues." Not an easy task at first, but it's my life, my body. Your not alone, nor are you crazy. Your tired and you need a break.
Sorry that you had to find us, but very glad to have you now. Feel free to read around the board and jump in anytime you'd like. And of course vent away anytime, we're a group that understands.
Gosh, sounds to me like the truth in your post, not just negativity. That's good by me. Also, unless your wonderwoman, 4 hours of sleep a night is not much since 1998. Would be hard for me to function well.
From experience, I'm grumpy too when I'm not sleeping. Even mean at times when I'm in endless pain. There's little difference between when your suppose to be alert and working and when you should be sleeping. All that time runs into itself at some point. You might be depressed, but I think of it as hopelessness after that amount of time. For me it was the thought that nothing was going to change. Life events and chemical inbalance are what depression are made of. Take someone's sleep away for great extended periods of time, throw in some RLS and I found hopelesness. I'm a pretty decent person when I'm rested and not in pain. My bet is that most of us around here are the same way.
3 1/2 mg is a pretty good size dose. Do you spread it out at all throughout the day or is this all at bedtime? At this dose and after all this time, it could be part of the problem.
I'm no doctor, but I was up to 3 mg spreadout daily in the last 10 months or so that I took it.
It's possible that you may need a added medication. It's also possible that Mirapex is causing some insomnia, augmentation the next day or just rebound. At this dose for this long it would not be wise to stop taking it all at once. You would need to wean off, as this is one medication some of us here have had problems with Just Stopping and Weaning Off.
There is something called a drug holiday for those of us that have taken the same medication for a long time. This can be helpful. Many take pain medications for this small break, but I seriouly wouldn't recommend that to you unless you were coming down on the dose. Ann, may be better able to address this with you. She has just been trying to get off of Mirapex as of late. It's not been an easy task. As for adding another medication, there are many of us that use a combination of things to try and control the RLS.
Don't be so hard on yourself. There comes a time when you simply need some healing sleep. You can't run on 4 hours for years and still be who you use to be. Doesn't work that way. Sleep deprivation can slowly rob you of health and well being.
Your Quality of life counts just like anyone else. That's what changed my mind about how I wanted to deal with my 24/7/all my life RLS. I took the pain and sleep issue to the doc and said "we need to address these issues." Not an easy task at first, but it's my life, my body. Your not alone, nor are you crazy. Your tired and you need a break.
Sorry that you had to find us, but very glad to have you now. Feel free to read around the board and jump in anytime you'd like. And of course vent away anytime, we're a group that understands.
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ViewsAskew
- Moderator
- Posts: 16585
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Florence, I feel for you. Not sure I'll remember everything I thought when I read the posts in this thread, but I'll try. And please forgive me if it is not logical - my brain is not firing well this evening. My first thought is for you to try not to worry about your daughter. Mirapex is wonderful for many people. She may handle it differently. It is so hard to see our kids with this. And she just started. In no time at all, you'll have read so many posts and have learned so much, that by the time it becomes a problem for her (if it even does), you'll know what she could try to make it better.
My thoughts are so scattered. Hmmm, OK, my take on your dose. Many people on these boards and many doctors are starting to believe that less is more. The average dose of Mirapex for RLS is .5 to .75. Yes, some people are higher, but after a certain point increasing it doesn't really seem to help most people and starts to cause other problems. From listening to people on the boards, I personally believe that if you start getting more symptoms while on Mirapex (in the begining while on a low dose) that you have a couple of choices. You can stop the Mirapex for a while and substitute Requip or a opioid for two weeks or so, then see if the lower dose of Mirapex will work again. Or you can add neurontin or benzo and keep the dose the same. Increasing the Mirapex is the least attractive choice. But many doctors do it. Yours, Jan's, mine and I'm sure lots of others.
You have to consider the context in which it is not working, too. Is it augmentation or rebound (happening more frequently or more severely than before or happening worse at the end of a dose)? This happens to 35% of people taking Mirapex. When this happens, I'm not sure what the best answer is. For me, the doctor gave me more, but then I got more augmentation - and ended up with 24/7 RLS. But for some people that doesn't happen. I'm not a doctor or an expert, but I can't help but wonder why a small dose turned into a 3.5 mg dose! Seems that something is not right.
There are also issues with stopping the drug. The longer you have taken it and the higher your dose, the more likely it can be difficult to stop. It took me three tries over an 8 month period and the use of methadone to finally quit it completely. Even after I tapered to .15 mg a night, each time I would stop, my RLS would become so out of control I couldn't take it. I tried neurontin, Sinemet, Requip, hydrocodone, Ultram, and Klonopin alone and in combination and I still had the worst 24/7 RLS imaginable. It goes away in 3 to 7 days and the RLS goes back to its prior level, but those 3-7 days can be very difficult. Again, not all people go through that, but a small amount do. If you do not have problems with it, you still have to taper off of it slowly, cutting so much each week, then again the following week until you are off of it.
Then there is finding the replacement for it. Because for some people the withdrawal of Mirapex can cause incredible augmentation, it may not be possible to judge the effectiveness of anything you take during that time frame. Once you are off of it for a few weeks, drugs may work differently. Not sure what the right approach is. Guess you have to assume that you won't have problems and see what happens, then if you do, you try a different course. Of course, you could always do what Jannie did - she tapered from 3 mg to 1.75 and supplments with other drugs.
I am not making any sense to me, hope there is something of merit in this rambling post. I will see how I feel tomorrow and see if I can sort it out better in my brain. I do know that I personally, having been through what I've been through and having read so many people's stories on this and a couple other boards, would not be comfortable staying at your dose and adding another drug. I'll try to better explain myself later. In the meantime, I sincerely hope you had a better night last night.
Ann
My thoughts are so scattered. Hmmm, OK, my take on your dose. Many people on these boards and many doctors are starting to believe that less is more. The average dose of Mirapex for RLS is .5 to .75. Yes, some people are higher, but after a certain point increasing it doesn't really seem to help most people and starts to cause other problems. From listening to people on the boards, I personally believe that if you start getting more symptoms while on Mirapex (in the begining while on a low dose) that you have a couple of choices. You can stop the Mirapex for a while and substitute Requip or a opioid for two weeks or so, then see if the lower dose of Mirapex will work again. Or you can add neurontin or benzo and keep the dose the same. Increasing the Mirapex is the least attractive choice. But many doctors do it. Yours, Jan's, mine and I'm sure lots of others.
You have to consider the context in which it is not working, too. Is it augmentation or rebound (happening more frequently or more severely than before or happening worse at the end of a dose)? This happens to 35% of people taking Mirapex. When this happens, I'm not sure what the best answer is. For me, the doctor gave me more, but then I got more augmentation - and ended up with 24/7 RLS. But for some people that doesn't happen. I'm not a doctor or an expert, but I can't help but wonder why a small dose turned into a 3.5 mg dose! Seems that something is not right.
There are also issues with stopping the drug. The longer you have taken it and the higher your dose, the more likely it can be difficult to stop. It took me three tries over an 8 month period and the use of methadone to finally quit it completely. Even after I tapered to .15 mg a night, each time I would stop, my RLS would become so out of control I couldn't take it. I tried neurontin, Sinemet, Requip, hydrocodone, Ultram, and Klonopin alone and in combination and I still had the worst 24/7 RLS imaginable. It goes away in 3 to 7 days and the RLS goes back to its prior level, but those 3-7 days can be very difficult. Again, not all people go through that, but a small amount do. If you do not have problems with it, you still have to taper off of it slowly, cutting so much each week, then again the following week until you are off of it.
Then there is finding the replacement for it. Because for some people the withdrawal of Mirapex can cause incredible augmentation, it may not be possible to judge the effectiveness of anything you take during that time frame. Once you are off of it for a few weeks, drugs may work differently. Not sure what the right approach is. Guess you have to assume that you won't have problems and see what happens, then if you do, you try a different course. Of course, you could always do what Jannie did - she tapered from 3 mg to 1.75 and supplments with other drugs.
I am not making any sense to me, hope there is something of merit in this rambling post. I will see how I feel tomorrow and see if I can sort it out better in my brain. I do know that I personally, having been through what I've been through and having read so many people's stories on this and a couple other boards, would not be comfortable staying at your dose and adding another drug. I'll try to better explain myself later. In the meantime, I sincerely hope you had a better night last night.
Ann
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cornelia
Rotigotine
Well said, Ann.
About the augmentation problem: in the near future Schwarz Pharma will introduce Rotigotine-patches, also a DA, for moderate to advanced RLS. Schwarz Pharma think that augmentation problems will not exist anymore when using the patches (on the forearm), because it is delivered to the system slowly during a 24-hour period, instead of delivering in one go with pills. That sounds promising and we will have to see how it works in practice.
Corrie
About the augmentation problem: in the near future Schwarz Pharma will introduce Rotigotine-patches, also a DA, for moderate to advanced RLS. Schwarz Pharma think that augmentation problems will not exist anymore when using the patches (on the forearm), because it is delivered to the system slowly during a 24-hour period, instead of delivering in one go with pills. That sounds promising and we will have to see how it works in practice.
Corrie
I guess this discussion board is both a blessing and a curse. I'm glad to find people who understand this, but it's frightening to hear how much worse it can get. Mine has finally become a daily issue and the sleep deprivation had been as issue for months, but now I have to add drug withdrawal to my list of worries.
I'm fortunate that I have a very supportive husband and older kids who pick up the slack in keeping up with the housework. I can't imagine how moms with young kids manage!
I'm fortunate that I have a very supportive husband and older kids who pick up the slack in keeping up with the housework. I can't imagine how moms with young kids manage!
wendy
Wendy--
I know what you mean about it being sobering to hear the worse case stories. But as much as RLS is a "progressive" condition, normally worsening with age, there's no "rule" that just because you live with it longer, you'll get as bad as the worst cases here.
Several of our most severe cases are people who have had really severe cases for a while, and they aren't all that old. There seems to be a variety of intensities of symptoms. I have several family members who also had/have RLS their whole lives who never really had much escalation of symptoms, or whose escalation never took them to the level of pain or sleeplessness that they needed medications.
I may or may not get to that point. I seem to have more trouble than the other cases in my family, but there doesn't seem to be a very strict pattern. My son has RLS, too, and we discovered that earlier than I remember having RLS, but I'm not going to borrow trouble thinking he's going to be worse than me because of that. I guess we'll just take it a day at a time and see how we do.
Hang in there!
Sara
I know what you mean about it being sobering to hear the worse case stories. But as much as RLS is a "progressive" condition, normally worsening with age, there's no "rule" that just because you live with it longer, you'll get as bad as the worst cases here.
Several of our most severe cases are people who have had really severe cases for a while, and they aren't all that old. There seems to be a variety of intensities of symptoms. I have several family members who also had/have RLS their whole lives who never really had much escalation of symptoms, or whose escalation never took them to the level of pain or sleeplessness that they needed medications.
I may or may not get to that point. I seem to have more trouble than the other cases in my family, but there doesn't seem to be a very strict pattern. My son has RLS, too, and we discovered that earlier than I remember having RLS, but I'm not going to borrow trouble thinking he's going to be worse than me because of that. I guess we'll just take it a day at a time and see how we do.
Hang in there!
Sara