Night eleven on .125 Mirapex, a perfect 6.5 hours of sleep. I have not had RLS symptoms wake me since I started on this med. I had some paresthesia in my arms before the dose kicked in last night but it went away.
I am cautiously optimistic that this is the drug for me (for now). May we all find solutions.
Heron
Mirapex
Wonderful to hear you're having such success and good sleep now! 
I just reread that and it seems so silly that we are comforting and congratulating each other on something that should be so simple and natural as sleep. Please keep us updated on how it's going with you and if you experience any new symptoms, side effects or augmentation. I'd sure appreciate it.
Day 6 on Mirapex. Last night, at 10pm, I took .25 Mirapex. No Klonopin. I headed up to bed at 11pm. I could tell it was going to be a rough night. My legs were a bit restless. Which was disappointing because it had been so nice to watch the drug work so well for the first few nights. AFter tossing and turning for 40 minutes or so I got up and took .5mgs of Klonopin. Stayed up until I was exhausted, which was 2am. Tossed and turned for another hour in bed and finally went to sleep. Woke up at 6:30 with my legs in full force. No headache today but the dull ache is back in my shins. I'm baffled, to say the least.
I just reread that and it seems so silly that we are comforting and congratulating each other on something that should be so simple and natural as sleep. Please keep us updated on how it's going with you and if you experience any new symptoms, side effects or augmentation. I'd sure appreciate it.
Day 6 on Mirapex. Last night, at 10pm, I took .25 Mirapex. No Klonopin. I headed up to bed at 11pm. I could tell it was going to be a rough night. My legs were a bit restless. Which was disappointing because it had been so nice to watch the drug work so well for the first few nights. AFter tossing and turning for 40 minutes or so I got up and took .5mgs of Klonopin. Stayed up until I was exhausted, which was 2am. Tossed and turned for another hour in bed and finally went to sleep. Woke up at 6:30 with my legs in full force. No headache today but the dull ache is back in my shins. I'm baffled, to say the least.
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
The Klonopin is what I've always taken for the RLS. It is a benzodiazapine. I started taking it for anxiety about 3 years ago. Up until then, the RLS had gone undiagnosed since I was 19. I'm now 33. The first night I took the Klonopin, I noticed my legs were at peace and so I've taken it ever since. My new dr., who isn't really a dr. She is a Family Nurse Practioner does not want me on it because of the dependancy possibilities. I was willing to go along with her, at first, because I had been needing higher and higher doses and it just wasn't working well anymore. She put me on Elavil and Trazodone and weaned me off of Klonopin for a very short time. A very short time because the Trazodone and Elavil made my symptoms explode. Which, if she had really known anything about RLS she would have known this could happen with these drugs and never prescribed them in the first place. So I stopped taking them and went back on the Klonopin at low doses and started the Mirapex. Because she is so determined not to prescribe anymore Klonopin to me, I am trying to not have to take it. But I don't think that's going to work. Last night being a good example. Hope that made sense and answered your question.
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
Well, time to look at the whole picture!
The purpose of this a bit long post is two-fold. To suggest that you keep on the combination of Klonopin and Mirapex (possibly increasing Mirapex gradually) and provide justification for your using Klonopin.
There are four major groups of medication that have been found effective in ameliorating the symptoms of RLS/PLMD:
The first listed by the California group is SEDATIVE/HYPNOTICS. In this group a prominent place is taken by Klonopin;
This sedative is in group (B) called Benzodiazepines marketed for anxiety. Others is this group include: Xanax, Valium (Diazepam), and a few others.
Now about Klonopin:
The second primary medication groups consist of Dopamine agonists, of which Mirapex is a good example.
The third one is anticonvulsants of which Neurontin is a typical example. The last but not the least one is opioids, especially useful where there is pain associated with RLS.
Let us forget for the time being what your nurse is willing or not willing to prescribe for you. You have to decide (and experiment) what is the best for you first so that you can fight for it.
Now to be specific to your problem, Sole, you have been using Klonopin by itself for a long time successfully. It is a legitimate medication for RLS. Even if you want to stop using it you would have to wean off of it very slowly.
You stopped the antidepressants and that is also good because they did more harm than good. You started on Mirapex ( I bet you did not expect that happening even before your next visit to your care taker).
Now you are finding out that Mirapex by itself is insufficient. This is not really surprising especially when you (probably all along, except perhaps for a week) were taking Klonopin as a help to counter the bad effect of the antidepressants. So it is to be expected that you still need it.
There is nothing wrong to use a moderate amount of Klonopin as well as Mirapex at least one hour prior to going to bed. Many people use medications from two different groups! This may not be the optimal combination for you but it works and appears that it would work well with Mirapex.
I am giving you the above quote as an ammunition against Ms. B. to retain your klonopin for the present. You can also increase your Mirapex since you are just at the titrating stage right now.
REMARK: If you want to wean off of Klonopin eventually you can gradually do it while replacing it with something else either from the same group, or from opioids, the best may be Ultram (which is not even an opioid but has been used successfully for RLS/PLM). It is in my plans to try to replace Hydrocodone with Ultram myself.
I hope this helps, Sole.
There are four major groups of medication that have been found effective in ameliorating the symptoms of RLS/PLMD:
The first listed by the California group is SEDATIVE/HYPNOTICS. In this group a prominent place is taken by Klonopin;
This sedative is in group (B) called Benzodiazepines marketed for anxiety. Others is this group include: Xanax, Valium (Diazepam), and a few others.
Now about Klonopin:
Klonopin/ Rivotril (Clonazepam)
Klonopin comes in 0.5 mg, 1 mg, and 2 mg tablets. The usual dose range is 0.5 to 2 mg. This was the first drug used for RLS and PLMD. This is due to its previous use in myoclonic seizures. PLMD used to be called nocturnal myoclonus and thus this drug was tried for RLS/PLMD with great success.
The drug has a rapid onset of action (less than 30 min) but it has a very long half-life (30-40 hours) causing a duration of action of 8-12 hours or longer. Daytime sleepiness can be a problem in a large percentage of patients on Klonopin. We therefore do not recommend this drug for most patients with RLS. It is, however, very commonly prescribed for RLS due to its early association with the treatment of RLS. It may work well in patients who do have morning RLS and do not get drowsy or sleepy due to the long lasting nature of this drug (which may persist at high levels in the morning causing daytime sleepiness).
Many physicians prescribe Klonopin, as this is the original drug used for RLS and is recommended by all the general medical textbooks that discuss RLS. Some sleep specialists (and patients) prefer to use this drug for RLS, but our experience has been that the shorter acting sedatives work better for most RLS sufferers.
The second primary medication groups consist of Dopamine agonists, of which Mirapex is a good example.
The third one is anticonvulsants of which Neurontin is a typical example. The last but not the least one is opioids, especially useful where there is pain associated with RLS.
Let us forget for the time being what your nurse is willing or not willing to prescribe for you. You have to decide (and experiment) what is the best for you first so that you can fight for it.
Now to be specific to your problem, Sole, you have been using Klonopin by itself for a long time successfully. It is a legitimate medication for RLS. Even if you want to stop using it you would have to wean off of it very slowly.
You stopped the antidepressants and that is also good because they did more harm than good. You started on Mirapex ( I bet you did not expect that happening even before your next visit to your care taker).
Now you are finding out that Mirapex by itself is insufficient. This is not really surprising especially when you (probably all along, except perhaps for a week) were taking Klonopin as a help to counter the bad effect of the antidepressants. So it is to be expected that you still need it.
There is nothing wrong to use a moderate amount of Klonopin as well as Mirapex at least one hour prior to going to bed. Many people use medications from two different groups! This may not be the optimal combination for you but it works and appears that it would work well with Mirapex.
I am giving you the above quote as an ammunition against Ms. B. to retain your klonopin for the present. You can also increase your Mirapex since you are just at the titrating stage right now.
REMARK: If you want to wean off of Klonopin eventually you can gradually do it while replacing it with something else either from the same group, or from opioids, the best may be Ultram (which is not even an opioid but has been used successfully for RLS/PLM). It is in my plans to try to replace Hydrocodone with Ultram myself.
I hope this helps, Sole.
Jumpy Owl
Re: Well, time to look at the whole picture!
jumpyowl wrote:
Now about Klonopin:Klonopin/ Rivotril (Clonazepam)
Klonopin comes in 0.5 mg, 1 mg, and 2 mg tablets. The usual dose range is 0.5 to 2 mg. This was the first drug used for RLS and PLMD. This is due to its previous use in myoclonic seizures. PLMD used to be called nocturnal myoclonus and thus this drug was tried for RLS/PLMD with great success.
The drug has a rapid onset of action (less than 30 min) but it has a very long half-life (30-40 hours) causing a duration of action of 8-12 hours or longer. Daytime sleepiness can be a problem in a large percentage of patients on Klonopin. We therefore do not recommend this drug for most patients with RLS. It is, however, very commonly prescribed for RLS due to its early association with the treatment of RLS. It may work well in patients who do have morning RLS and do not get drowsy or sleepy due to the long lasting nature of this drug (which may persist at high levels in the morning causing daytime sleepiness).
Many physicians prescribe Klonopin, as this is the original drug used for RLS and is recommended by all the general medical textbooks that discuss RLS. Some sleep specialists (and patients) prefer to use this drug for RLS, but our experience has been that the shorter acting sedatives work better for most RLS sufferers.
Where did you get that quoted information?Let us forget for the time being what your nurse is willing or not willing to prescribe for you. You have to decide (and experiment) what is the best for you first so that you can fight for it.
Ideally, I'd like to continue the Klonopin with the Mirapex. However, my increasing tolerance of the drug and need to constantly up the dose is a concern to me. How can I remedy this? Would switching between Klonopin and Ultrim be a good option? This is something I want to have preplanned BEFORE I see Ms. B on the 23rd. I want to try and leave as little thinking to her as possible.Now to be specific to your problem, Sole, you have been using Klonopin by itself for a long time successfully. It is a legitimate medication for RLS. Even if you want to stop using it you would have to wean off of it very slowly.
Yes, very slowly. I ran out, night before last, taking only .5mgs on Sunday night. None last night and this morning am feeling the withdrawal symptoms. Vertigo and nausea. I have refills so no worries there.You stopped the antidepressants and that is also good because they did more harm than good. You started on Mirapex ( I bet you did not expect that happening even before your next visit to your care taker).
You are quite correct!Now you are finding out that Mirapex by itself is insufficient. This is not really surprising especially when you (probably all along, except perhaps for a week) were taking Klonopin as a help to counter the bad effect of the antidepressants. So it is to be expected that you still need it.
I was only taking the antidepressants for a little over a week. The Klonopin, I've been taking all along but had built up a tolerance to it over the past 6 months or so.You can also increase your Mirapex since you are just at the titrating stage right now.
I am at .125 during the day, when needed and .25 at night. When I do need to increase it, I'm not sure by how much. .125?REMARK: If you want to wean off of Klonopin eventually you can gradually do it while replacing it with something else either from the same group, or from opioids, the best may be Ultram (which is not even an opioid but has been used successfully for RLS/PLM). It is in my plans to try to replace Hydrocodone with Ultram myself.
I don't intend to wean off Klonopin, unless I am forced to. I will look at Ultrim as an alternative, considering that I am now experiencing pain as a relatively new symptom.I hope this helps, Sole.
You have no idea, Jumpy! I am so grateful for your time and talent investment. Thank you.
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
Quick reply
I usually post the source, here I did not do a good job because just mentioned the South California RLS Suport Group's Website.
The link is:
http://www.rlshelp.org/rlsrx.htm
You will find it very useful. It discusses the sedatives in quite a detail. It also suggests that while Klonopin is widely used, it may not be the best sedative (I myself like either Lorazepam or Flurazepam) to use. The reason for being widely used is historical mostly.
I agree with everything you say in your post. If I compare this post with your first one, I have to express my admiration what a "quick study" you are! All you needed was a nudge in the right direction.
You can do it both ways. I would try to gradually switch from Klonopin to Flurazepam or Lorazepam (Ativan). These are not that different from Valium (Diazepam) or Klonopin. Ms B. may have some idea how to do it.
The other possibility is to switch to another class of medication. Read the sedative section, and also the opioid section of the link above.
0.125 mg would be a good increment with Mirapex. You could even double the dose 0.25 mg but only if you need it. Since you tolerate it well. The idea is to use the minimum effective dosage.
Yes, you should be well prepared for your visit. And emphasize that this is an affliction where the doctor/patient co-operation is a must! The doctor cannot do it alone.
The link is:
http://www.rlshelp.org/rlsrx.htm
You will find it very useful. It discusses the sedatives in quite a detail. It also suggests that while Klonopin is widely used, it may not be the best sedative (I myself like either Lorazepam or Flurazepam) to use. The reason for being widely used is historical mostly.
I agree with everything you say in your post. If I compare this post with your first one, I have to express my admiration what a "quick study" you are! All you needed was a nudge in the right direction.
You can do it both ways. I would try to gradually switch from Klonopin to Flurazepam or Lorazepam (Ativan). These are not that different from Valium (Diazepam) or Klonopin. Ms B. may have some idea how to do it.
The other possibility is to switch to another class of medication. Read the sedative section, and also the opioid section of the link above.
0.125 mg would be a good increment with Mirapex. You could even double the dose 0.25 mg but only if you need it. Since you tolerate it well. The idea is to use the minimum effective dosage.
Yes, you should be well prepared for your visit. And emphasize that this is an affliction where the doctor/patient co-operation is a must! The doctor cannot do it alone.
Jumpy Owl
Lorazepam
Sole,
I had great success for several years with lorazepam (.5mg) only for my RLS, but never took it more than two or three nights in a row. Can't really tell you about weaning off it since I never took it regularly. Best,
Heron
I had great success for several years with lorazepam (.5mg) only for my RLS, but never took it more than two or three nights in a row. Can't really tell you about weaning off it since I never took it regularly. Best,
Heron
Me, too!
I posted on this in my thread. But I was on Lorazepam (evening only) for over a decade for sleep. It took me several days to wean off. At about that time I started to have RLS. Possibly a coincidence. 
I personally preferred Ativan (Lorazepam) to Valium, Librium, and others from the same group. It also helped my wife.
I personally preferred Ativan (Lorazepam) to Valium, Librium, and others from the same group.
It also helped my wife.Jumpy Owl
And the dreams continue...
Night 13 on .125 Mirapex: Phew, the dreams are INTENSE! Rather entertaining though, and nothing nightmarish at all. Some morning sluggishness but no other side effects to speak of. Crossing my fingers,
Heron
Heron
Hi, Heron!
Interestingly I have no recall of REM sleep at all, even though I must have them. 
I am definitely using Mirapex twice, one in the morning (A.M.) as my legs feel tense and lead-like. I try to keep it to the 0.25 mg pill (twice) even at night. But I must take it early, one hour before retiring.
I am definitely using Mirapex twice, one in the morning (A.M.) as my legs feel tense and lead-like. I try to keep it to the 0.25 mg pill (twice) even at night. But I must take it early, one hour before retiring.Jumpy Owl
Night 9 on Mirapex. I feel awful. I took .25mgs of Mirapex and 1 mg of Klonopin at around 10pm last night. Got to sleep at around 1am. The parathesia was a little worse than it has been the past week but managable. My legs ached terribly all day and night, yesterday. They still ache terribly this morning. But now, it's not only in my shins. The pain has graduated to the entire length of my legs. I seemed to get 6 hours of sleep but still feel exhausted this morning. Yesterday, I started getting a number of cold sores on the inside of my mouth. This happens after too many days of no good sleep. I hurt all over and am having a hard time getting anything done due to the exhaustion. This is getting very discouraging. My appt. with my doc is tomorrow. I hope she helps me or refers me to someone who can. Sorry to be so whiney.
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
Pain medication
Go to the topic of Heron on the Algorithm, Sole. I posted there something you could print out for your care provider.
Clearly you need a good pain medication. Look at Refractive RLS and its suggested treatment.
Clearly you need a good pain medication. Look at Refractive RLS and its suggested treatment.
Jumpy Owl
