Hi I was reading some of your mail and been wandering about the Mirapex.
I have been on Mirapex for 3-4 years a good sized dose it works makes me really tired though but I sleep!!!!!!! which up until then for about 5 years I really could not cope!!!!!!
Please let me know if you know of any reasons not to carry on with mirapex. My RLS is not Genetic.
Thank you
Mirapex
Hi and Welcome
Hi Julieboo,
We are so glad to have you here, sorry RLS brought it about.
If Mirapex is working and your sleeping, ohter than the daytime sleepiness? Why Change?
How much are you taking? We've met people on 5mg a day, 3 mg a day...both would be considered high by most.
Is the daytime sleepiness too much of a problem?
Tell us about your non-generic RLS. I'm a lifer, 41 yrs. old now, genetic gift from both sides of my family. I'm under control for the most part with a combination medications, not perfect, but doing good. I did take Mirapex for almost 3 yrs., we parted ways as best as possible. LOL
We're interested in your story if you care to share.
I slept 8 yrs trying to cope without any help painful 24/7 RLS that kept me from my own life more than not. I hope you know that your not alone. This group is made up of many levels of severity, but any RLS is the pits.
Welcome to the group and look forward to chatting with you again.
We are so glad to have you here, sorry RLS brought it about.
If Mirapex is working and your sleeping, ohter than the daytime sleepiness? Why Change?
How much are you taking? We've met people on 5mg a day, 3 mg a day...both would be considered high by most.
Is the daytime sleepiness too much of a problem?
Tell us about your non-generic RLS. I'm a lifer, 41 yrs. old now, genetic gift from both sides of my family. I'm under control for the most part with a combination medications, not perfect, but doing good. I did take Mirapex for almost 3 yrs., we parted ways as best as possible. LOL
We're interested in your story if you care to share.
I slept 8 yrs trying to cope without any help painful 24/7 RLS that kept me from my own life more than not. I hope you know that your not alone. This group is made up of many levels of severity, but any RLS is the pits.
Welcome to the group and look forward to chatting with you again.
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Penguinrocks
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Hi Julieboo
Welcome welcome!!!!
I see you've been visited by the angel from Texas!
I don't know what I would have done if i hadn't found this site. I honestly thought I was losing my ever lovin' mind.
I love the people on this site and i have learned so much in such a short time from everyone
Please stay, post, cry, vent, share....we're family here!
Loves
Penguin
Welcome welcome!!!!
I see you've been visited by the angel from Texas!
I don't know what I would have done if i hadn't found this site. I honestly thought I was losing my ever lovin' mind.
I love the people on this site and i have learned so much in such a short time from everyone
Please stay, post, cry, vent, share....we're family here!
Loves
Penguin
Beware the Penguin
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ViewsAskew
- Moderator
- Posts: 16581
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Hi Julieboo,
I think Becat's advice was spot on. If it is working, you are not augmenting (symptoms getting worse), getting tolerance (need more of the drug than you used to), and you're sleeping, it sounds good.
You did mention it making you tired - if this is at night and you sleep - that's great! If you are tired during the day, that might be different. Per the does size - most people do well with smaller dosages. That doesn't mean everyone though. If you let us know how much, we might be able to let you know more based on our experiences. For example, Jan (#1) was taking 5 mg a day. She's managed to get down to 1.75 mg a day and it's controlling her RLS (Jan, tell me if I got that wrong).
Do you know if your RLS is primary or secondary? Just because no one else in your family seems to have it, it could still be primary. If you were under 50 when it started and don't have another condition causing it, it is primary.
Glad you found the site.
Ann
I think Becat's advice was spot on. If it is working, you are not augmenting (symptoms getting worse), getting tolerance (need more of the drug than you used to), and you're sleeping, it sounds good.
You did mention it making you tired - if this is at night and you sleep - that's great! If you are tired during the day, that might be different. Per the does size - most people do well with smaller dosages. That doesn't mean everyone though. If you let us know how much, we might be able to let you know more based on our experiences. For example, Jan (#1) was taking 5 mg a day. She's managed to get down to 1.75 mg a day and it's controlling her RLS (Jan, tell me if I got that wrong).
Do you know if your RLS is primary or secondary? Just because no one else in your family seems to have it, it could still be primary. If you were under 50 when it started and don't have another condition causing it, it is primary.
Glad you found the site.
Ann
It's Jan #1
Hi It's Jan #1
Hi Julieboo. Actually, I was prescribed 5 mg. Mirapex daily(by my former neuro), but, on my own, because I had read that that amount was dangerously high, I decided to only take 3 mg. daily. According to the neuro I am now seeing, 5 mg. Mirapex could have given me a heart attack--yep, that's what he told me.
So, as Ann, said, it has taken me one month to wean off of the 3 mg. down to 1.75, which I am currently on. The weaning off process was not pleasant. My neuro said I would have side effects, and have them I did.
However, I am, as of two nights ago, finally getting maybe 3 hours sleep without waking up. The rest of the night, my sleep is intermittant. I do have other problems which my neuro is trying to find the cause of.
1.75 mg. isn't controlling my RLS, though, Ann, but that's probably because my body was so used to a higher dose for so long. I have the creepy crawlies during the day, and early evening. I have a nerve conduction test on Tuesday at my neuro's office and will tell him when I see him.
My case is unusual, though, so please, do not use me as an example. As I said, I'm going through testing for some other things right now. When I was on Mirapex and had nothing else wrong, it worked just fine for me.
Good luck, Julie, and may I add my welcome along with Becat's and Ann's to our family.
Jan
Hi Julieboo. Actually, I was prescribed 5 mg. Mirapex daily(by my former neuro), but, on my own, because I had read that that amount was dangerously high, I decided to only take 3 mg. daily. According to the neuro I am now seeing, 5 mg. Mirapex could have given me a heart attack--yep, that's what he told me.
So, as Ann, said, it has taken me one month to wean off of the 3 mg. down to 1.75, which I am currently on. The weaning off process was not pleasant. My neuro said I would have side effects, and have them I did.
However, I am, as of two nights ago, finally getting maybe 3 hours sleep without waking up. The rest of the night, my sleep is intermittant. I do have other problems which my neuro is trying to find the cause of.
1.75 mg. isn't controlling my RLS, though, Ann, but that's probably because my body was so used to a higher dose for so long. I have the creepy crawlies during the day, and early evening. I have a nerve conduction test on Tuesday at my neuro's office and will tell him when I see him.
My case is unusual, though, so please, do not use me as an example. As I said, I'm going through testing for some other things right now. When I was on Mirapex and had nothing else wrong, it worked just fine for me.
Good luck, Julie, and may I add my welcome along with Becat's and Ann's to our family.
Jan
No one is alone who had friends.
Hi, Julieboo!
I am not sure it is better later than never especially after reading such excellent advices as one can read above.
After Hydrocodone, Topamax, Tramadol, Neurontin, and finally on Mirapex plus antidepressants, then ONLY Mirapex, I feel fairly well-controlled. I agree with Jan. Dosage is important. Also distribution of the daily dose.
The borderline for narcolepsy appears to be about 0.75 mg per day. It is worse if one takes it all at once!
So I am taking 0.25 mg t.i.d. and it is fine. I have to watch for skipping a dose or being late with a dose because the symptoms come with a vengeance.
What is the dose you are taking? I believe the starting dose is 0.125 mg per day (?).
My neurologist (F/50?) usually prescribes the other dopamine agonist Requip as it causes nausea less likely. She left me with Mirapex as I do not have that side effect.
She is also good in distinguishing pain caused by RLS and pain from other causes. If the former, one does not need a pain killer on top. But many of us do at least occasionally!
I also have secondary RLS, so we are in the minority.
Angel from Plano, TX, what a fitting moniquer!
Love to all!
After Hydrocodone, Topamax, Tramadol, Neurontin, and finally on Mirapex plus antidepressants, then ONLY Mirapex, I feel fairly well-controlled. I agree with Jan. Dosage is important. Also distribution of the daily dose.
The borderline for narcolepsy appears to be about 0.75 mg per day. It is worse if one takes it all at once!
So I am taking 0.25 mg t.i.d. and it is fine. I have to watch for skipping a dose or being late with a dose because the symptoms come with a vengeance.
What is the dose you are taking? I believe the starting dose is 0.125 mg per day (?).
My neurologist (F/50?) usually prescribes the other dopamine agonist Requip as it causes nausea less likely. She left me with Mirapex as I do not have that side effect.
She is also good in distinguishing pain caused by RLS and pain from other causes. If the former, one does not need a pain killer on top. But many of us do at least occasionally!
I also have secondary RLS, so we are in the minority.
Angel from Plano, TX, what a fitting moniquer!
Love to all!
Jumpy Owl