Well, after the night of no sleep I took myself off the Mirapex and now my sleep has returned to it's usual level of dysfunction. Never thought I'd be grateful for that!
I may delay talking to my neurologist about a new treatment for a few weeks though - between the ReQuip and the Mirapex, the past month has been hell on my psyche due to the major disruptions of my sleep. I'm not ready to jump back on that ferris wheel yet...I may just 'enjoy' a few weeks of my normal sleep dysfunction before I start trying to find another solution.
As per usual, thank you all for your feedback and support - you're really helping me make informed decisions about my own body and what's working/not working.
Dopamine Agonists and Augmentation
psychick,
I, like you have tried these 2 d/a's. I don't understand how they got the nod over so many others, but neither seem to be working very well for many people. I tried Mirapex 1st & all the same things happened to me. For now, I'm on requip at 4mg per day (1mg in early afternoon & 3 at nite) along with a darvocet or 2. my afternoons are turning into hell. I average about 5 hours of sleep on this combo, which is better than the 0 hours on mirapex. I've ordered permax from Canada over 3 weeks ago, but have yet to receive it. I think we are all hoping that the rotigotine patch will be available soon, to at least get another option. Hang in there, hopefully, help is on the way!! tnt
I, like you have tried these 2 d/a's. I don't understand how they got the nod over so many others, but neither seem to be working very well for many people. I tried Mirapex 1st & all the same things happened to me. For now, I'm on requip at 4mg per day (1mg in early afternoon & 3 at nite) along with a darvocet or 2. my afternoons are turning into hell. I average about 5 hours of sleep on this combo, which is better than the 0 hours on mirapex. I've ordered permax from Canada over 3 weeks ago, but have yet to receive it. I think we are all hoping that the rotigotine patch will be available soon, to at least get another option. Hang in there, hopefully, help is on the way!! tnt
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SquirmingSusan
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- Location: Minnesota
- Contact:
Psychick, I know what you mean about the Requip and Mirapex. It took months for my brain to get back to semi-"normal" after taking Requip. I went through crazy depression and mood swings and just didn't function well. And they wanted me to take "morontin" (Neurontin) immediately. I think the only thing that won't make things worse in the meantime would be to get an opioid painkiller to knock down the RLS until you're recovered enough from the DAs to want to try things again.
But I'm not a doctor and don't play one on TV.
But I'm not a doctor and don't play one on TV.
Susan
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cornelia
I am in the middle of my drug holiday from Requip, Neurontin and Tramadol Retard. My neuro made an action plan, because I was not allowed to stop all 3 of them in one go.
Last Friday I took only half of my Neurontin dose and stopped Requip 1 mg cold turkey My neuro and I thought I augmented on it (after 6 years). I have 24/7 RLS, my PLMW's were horrendous. Maybe it's a bit early to say, but after 2 days of terrible RLS my PLMW's are much, much lighter. So I think I definately was augmenting.
I still have to stop Neurontin and Tramadol Retard. I am sleeping very badly, but it will take time before that is settled. I feel I have no brains. We have to work on that.
In the meantime I am on 2.5 mg Oxynorm, which will probably titrated up to 5 mg OxyContin twice daily. This is after my neuro spoke to dr Walters.
To be continued..
Corrie
Last Friday I took only half of my Neurontin dose and stopped Requip 1 mg cold turkey My neuro and I thought I augmented on it (after 6 years). I have 24/7 RLS, my PLMW's were horrendous. Maybe it's a bit early to say, but after 2 days of terrible RLS my PLMW's are much, much lighter. So I think I definately was augmenting.
I still have to stop Neurontin and Tramadol Retard. I am sleeping very badly, but it will take time before that is settled. I feel I have no brains. We have to work on that.
In the meantime I am on 2.5 mg Oxynorm, which will probably titrated up to 5 mg OxyContin twice daily. This is after my neuro spoke to dr Walters.
To be continued..
Corrie
dopamine agonist and augmentation
Hi Corrie I am glad that you are finding some relief on your plmw's and hope that everything else gets better with you. Sending good thoughts your way.
I am not sorry that I stopped requip as that was a nightmare for me. I only had it for 10 months. Wow you had it for 6yrs and cannot imagine what you went through; however I do somewhat except yours was 6 times worse than mine.
You sound like your neuro is on top of things. Thanks for sharing that with us. Have a good day.
I am not sorry that I stopped requip as that was a nightmare for me. I only had it for 10 months. Wow you had it for 6yrs and cannot imagine what you went through; however I do somewhat except yours was 6 times worse than mine.
You sound like your neuro is on top of things. Thanks for sharing that with us. Have a good day.
Charlene
Taking one day at a time
Taking one day at a time
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Corrie, how excellent that your neuro was willing to talk to Dr Walters. Not that Dr Walters is the best doctor, just that they are working together. I wish more of them would do that.
I am so happy that it's decreased. I totally understand about the brain thing, but hope it all gets better soon.
I am so happy that it's decreased. I totally understand about the brain thing, but hope it all gets better soon.
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.
Hi: I was taking Requip 1 mg for about a year, it worked well for me but I was tired all the time. It didn't keep me awake. I switched to Mirapex .25 mg recently, I have been pretty nausiated and it doesn't work as well as the Requip, so far after a couple weeks, it's not keeping me awake, it makes me drowsy, but not as much as the Requip. If the nausea doesn't go away, I'll probably go back on the Requip.
Thanks
Donna
Thanks
Donna
dvel
I still haven't gone back to my neuro, but between a root canal and minor outpatient surgery they've given me 2 Rx for hydrocodone/acetaminophen 5/500 this month. Taking 1 at a time seems to help some with the rls, not completely, but some, and doesn't make me too loopy - but taking 2 at a time (day of surgery) put me out of service completely. I don't want to have to take this med for my rls forever, but I'm not really willing to try another dopamine agonist at this point and I've heard so much negative about neurontin (morontin) that I'm wary of that too. I guess I'll make an appt with my neuro for after Thanksgiving and discuss it with him. I've actually been getting sleep b/c I'm taking 1/2 lunesta per night, but it's still not good rest - my PLMS mean that I'm drowsy and tired the next day even after 9 good hours of sleep. erg. Like the rest of you on this forum, the easy answers never apply here. =/
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
First let me say I have never taking Mirapex or requip or any of the Parkinson meds.
I do see so many who post here that are taking these meds, talking about the recommended dose. My question is this the dose that is recommended in the pamplet of these meds? If so I think you should research these meds, and I "THINK" you will find that those are recommended for people who are dealing with Parkinsons. According to all the information I have read on the RLS websites, RLSer's should not take the same amount that is recommended for Parkinsons, that RLS requires alot LESS of these meds, and if you start off taking a high dose you will have a greater chance of having side affects and going into augumentation and rebound with your RLS.
I am just not sure that Dr's understand the difference in RLS and Parkinsons and I am very leary that they are not doing the research to discover that RLSer's need less of the Parkinson meds.
I will be ever so happy when one of these Years Drs will be educated totally about RLS, but until that day comes, we all need to read and educate ourselves BEFORE we talk with a Dr about RLS. I have saved myself much misery for myself by educating myself and being able to say NO THANKS to many meds, that Drs have offered me, for rls and just for other health problems, such as blood pressure, when it was discovered that I was having high blood pressure, I knew that many many B/P meds can make rls worse, I had read when Clonodine(Catapres) is actually at times good for RLS, so of course I ask for Clonodine and explained why, so I feel I saved myself days of increased RLS. There are many OTC meds and prescription meds that can and will make your RLS so much worse.
Please read all that you can and educate yourself of all things about RLS!!
Someone on this board has the web addy for Dr's B's email addy where you can send questions about meds for RLS, he is a RLS specialist.
I do see so many who post here that are taking these meds, talking about the recommended dose. My question is this the dose that is recommended in the pamplet of these meds? If so I think you should research these meds, and I "THINK" you will find that those are recommended for people who are dealing with Parkinsons. According to all the information I have read on the RLS websites, RLSer's should not take the same amount that is recommended for Parkinsons, that RLS requires alot LESS of these meds, and if you start off taking a high dose you will have a greater chance of having side affects and going into augumentation and rebound with your RLS.
I am just not sure that Dr's understand the difference in RLS and Parkinsons and I am very leary that they are not doing the research to discover that RLSer's need less of the Parkinson meds.
I will be ever so happy when one of these Years Drs will be educated totally about RLS, but until that day comes, we all need to read and educate ourselves BEFORE we talk with a Dr about RLS. I have saved myself much misery for myself by educating myself and being able to say NO THANKS to many meds, that Drs have offered me, for rls and just for other health problems, such as blood pressure, when it was discovered that I was having high blood pressure, I knew that many many B/P meds can make rls worse, I had read when Clonodine(Catapres) is actually at times good for RLS, so of course I ask for Clonodine and explained why, so I feel I saved myself days of increased RLS. There are many OTC meds and prescription meds that can and will make your RLS so much worse.
Please read all that you can and educate yourself of all things about RLS!!
Someone on this board has the web addy for Dr's B's email addy where you can send questions about meds for RLS, he is a RLS specialist.
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SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
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- Contact:
Mack, one of the biggest problems that I see is the darned starter packs that just tell people to increase up to the highest dose, whether or not the lower doses work. And these starter packs ARE for RLS. And even the starting doses in those packs can be too high for some people.
But how do we tell the medical community and get them to listen?! It seems like modern medicine is based on the idea that if some is good, more is better. But some of us are quite sensitive to medication, and can use lower doses. That's where knowledgeable doctors are crucial - but impossible to find. Sigh.
But how do we tell the medical community and get them to listen?! It seems like modern medicine is based on the idea that if some is good, more is better. But some of us are quite sensitive to medication, and can use lower doses. That's where knowledgeable doctors are crucial - but impossible to find. Sigh.
Susan
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
So now they have a starter pack for RLS in both Mirapex and requip? Wow I didnt know that. I think the RLS foundation should be working with the manufactor of these meds, and help write the instruction pamplet. How much time would it take to just state start out at a very low dose and increase as needed.
I am so happy for all the attention that has been given RLS over this last year or so, but I personally think the Drugs companies have gotten into the middle of this without really knowing the pro's & con's of RLS and I am so afraid its doing more harm than good.
So many people seem to be having negative affects with requip/mirapex because they are probably starting out at much higher dose than needed. Due to all the side affects they are going thru they will never wish to go back and re-try these meds.
Well I sure don't have the answers to all this, but it really concerns me to see so many posting about the side affects with these meds. Hopefully the drug companies will soon figure this out!
I am so happy for all the attention that has been given RLS over this last year or so, but I personally think the Drugs companies have gotten into the middle of this without really knowing the pro's & con's of RLS and I am so afraid its doing more harm than good.
So many people seem to be having negative affects with requip/mirapex because they are probably starting out at much higher dose than needed. Due to all the side affects they are going thru they will never wish to go back and re-try these meds.
Well I sure don't have the answers to all this, but it really concerns me to see so many posting about the side affects with these meds. Hopefully the drug companies will soon figure this out!
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cornelia
Mack, both of my experiences with Requip and Mirapex involved the starter pack designed specifically for RLS. unfortunately the negative side effects I experienced started with the lower doses of ReQuip and I never got past the lowest dose of Mirapex (.25).
I think, as Cornelia mentioned, most people do well on dopamine agonists for awhile, but in my case, they didn't work for even a week - I would attribute that to my chemistry and that of a small percentage of rls'ers rather than the drugs efficaciousness in general.
Outliers R US
I think, as Cornelia mentioned, most people do well on dopamine agonists for awhile, but in my case, they didn't work for even a week - I would attribute that to my chemistry and that of a small percentage of rls'ers rather than the drugs efficaciousness in general.
Outliers R US
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Sorry I should not have come down on the Parkinson meds, as I know some of you do well on them, but it just seems lately that I have read so many post of those having extreme difficulties on them. I should not even express my views on these meds as I have never tried them. I have no reason why I feel as I do about these meds, but for some reason I am very leary of ever trying them, will not say never, because as we all know when it gets really bad then we will almost try anything.
I guess what surprised me was the doses suggested by their Dr.
it seems like everyone for the last few wks, just starting these meds have started out with a higher dose than I have seen recommended here over and over again. I just hate to see people have to suffer because Drs dont seem to know all the pros/cons of RLS. I am waiting for the day when ALL Drs know about RLS !
Ok sorry I will get off my soap box now..*L*
I guess what surprised me was the doses suggested by their Dr.
it seems like everyone for the last few wks, just starting these meds have started out with a higher dose than I have seen recommended here over and over again. I just hate to see people have to suffer because Drs dont seem to know all the pros/cons of RLS. I am waiting for the day when ALL Drs know about RLS !
Ok sorry I will get off my soap box now..*L*