Hi girls! Angelgirl here- Lori.
I have been on Mirapex since March 15, 2005 after having a sleep study showing 248 leg movements in 3 hours.
I thought I had decreased in symptoms since starting meds now I'm not so sure. I haven't been sleeping not like that's something new-but the twitching or jumping movement has been of more violent speed and more movement. I've noticed this over the last week or two.
I fell asleep today in my recliner for about an hour. My husband was watching me and said I didn't stop moving the whole time I napped- to the point- he thought I needed to be seen by a doctor ASAP.
I don't know what is going on if RLS is getting worse or if something is triggering the increase of symptoms. I haven't changed any medication since March. Does anyone see an increase in symptoms when you have your period?? I was just wondering if that had anything to do with it.
I wouldn't really think much about this but like I said my husband actually saw me twitching and is concerned about my sleep and violent movements.
Any one have any ideas??
Thanks. Talk you guys latter.
Lori
Increase in RLS symptoms
Increase in RLS symptoms
POODLES RULE
Hiya Angel
Hiya Angel,
Yes, that time of the month before and during is worse for me. I'm pretty sure others have said the same thing. It's either the hormones and/or that plus the week of is clearly blood loss issues.
Remind me, did you have growing pains as a kid? Is this a genetic thing for you?
Reason I ask, is that many of us use a combination of things for treatment. If your next appt. isn't soon, you should call your doc.. Just tell him this dose is not working.
Now, not everyone thinks that upping a dopamine is the right thing to do. It's rather early to need a 'drug holiday"....However, the real thing here, everyone is so different as to what works well for them. You may need a little more or something different..Maybe even a combination of medications. So how much Mirapex are you taking now? It's just a matter of trial and error for most of us. Even with that being said, what works right now, might not in a year. So don't give up, it's just a matter of finding the right thing.
Glad to hear from you again.
Yes, that time of the month before and during is worse for me. I'm pretty sure others have said the same thing. It's either the hormones and/or that plus the week of is clearly blood loss issues.
Remind me, did you have growing pains as a kid? Is this a genetic thing for you?
Reason I ask, is that many of us use a combination of things for treatment. If your next appt. isn't soon, you should call your doc.. Just tell him this dose is not working.
Now, not everyone thinks that upping a dopamine is the right thing to do. It's rather early to need a 'drug holiday"....However, the real thing here, everyone is so different as to what works well for them. You may need a little more or something different..Maybe even a combination of medications. So how much Mirapex are you taking now? It's just a matter of trial and error for most of us. Even with that being said, what works right now, might not in a year. So don't give up, it's just a matter of finding the right thing.
Glad to hear from you again.
Lori--
Can't speak to your medication issues, since I don't take meds yet.
But I do notice an increase in symptoms around that time of the month. I'm with Becat on the theory too... hormones and/or blood volume/iron issues. I actually wrote a couple of my RLS friends today complaining (okay, WHINING and GRUMPING) because I had a much-worse-than-normal RLS episode today, early in the afternoon. I think it was a combination of the problem we were just discussing and the onset of the flu, perhaps.
Hang in there, and I hope you get some relief one way or another!
Sara
Can't speak to your medication issues, since I don't take meds yet.
But I do notice an increase in symptoms around that time of the month. I'm with Becat on the theory too... hormones and/or blood volume/iron issues. I actually wrote a couple of my RLS friends today complaining (okay, WHINING and GRUMPING) because I had a much-worse-than-normal RLS episode today, early in the afternoon. I think it was a combination of the problem we were just discussing and the onset of the flu, perhaps.
Hang in there, and I hope you get some relief one way or another!
Sara
Increase in RLS symptoms
Thanks for the replys- guys!! Angelgirl- Lori Here
When I had my sleep study along with the movements I mentioned above I also had No REM sleep and increased Alpha waves when I did sleep. From what I understand is daytime waves when I sleep. So when I sleep I'm really not getting sleep.
I am on .125 of Mirapex at bedtime- which I think I fall asleep faster.
These are the other meds I'm on:
Provigil 200 am and 100-200 at 12 noon depending on wakefullness
Prevacid 30 mg in am- Acid Reflux
Toprol XL 50 mg- 12 noon and hydrochlorzide 25 mg- High BloodPressure
Daypro 600 mg- For Inflamation
Cymbalta 60 mg in am- Depression and peripheral nerve damage NEW
Duragesic patch 25 mg 1 patch every 3 days- Pain Patches
Zanaflex 2 mg 3-4 a day- Muscle spasms
Ultracet 37.5 1-4 times a day- Pain Med
I was also on Seraquel for depression- other antidepressants I had problem taking-but after seeing your list of meds that increases RLS I spoke to my family doctor- she said it was probally casuing the RLS. My phyciatrist said it wasn't and my Rheumatoidologist said it wasn't causing problem. I weaned myself off Seraquel over a period of 3 weeks and have been off it since April.
I was in a car accident and have a plate and 4 screws in my neck- fibromyalgia, chronic pain and RLS.
I'm 40 years old and sick of taking all this medication. I work part time and driving at times has been frightening- falling asleep.
I work at a hospital and got a letter of termination on Xmas eve that if I wasn't back to work I was terminated after working here for 17 years. Needless to say I went back to work which was a mistake. I work for my health insurance and then the Medication above cost me $375-$425 per month for co-pays. I work and I end up in the hole by the time I pay for scripts and other medical bills. Thank god I'm married and my husband pays my way!
What's really sick is my family Doctor wanted to put me off on disability before I went back to work but I didn't want to throw in the towel. I wished I did- financially. Now if I go off I have to be off 6 months before you can even file and I wouldn't have any health insurance while you wait. We own our own home and my huband makes good $ so I don't qualify for any kind of help with my medical bills.
You speak of maybe Iron problems when it's that time of the month. Does anyone take supplements for this. Please let me know.
I know this is a huge list of meds and I don't want to contine to take these the rest of my life. If anyone has any input as far as any other medication listed that may also be creating increased RLS please let me know.
I know when I call the doctor who prescribed the Mirapex I probally will only talk to the PA and they will probally just increase the dose without seeing me.
I think I'll give it a couple of days and see if symptoms calm down.
Any input would be greatly appreciated. Thanks for all your help and support. Talk to you guys again. Bye for now!!
Lori
When I had my sleep study along with the movements I mentioned above I also had No REM sleep and increased Alpha waves when I did sleep. From what I understand is daytime waves when I sleep. So when I sleep I'm really not getting sleep.
I am on .125 of Mirapex at bedtime- which I think I fall asleep faster.
These are the other meds I'm on:
Provigil 200 am and 100-200 at 12 noon depending on wakefullness
Prevacid 30 mg in am- Acid Reflux
Toprol XL 50 mg- 12 noon and hydrochlorzide 25 mg- High BloodPressure
Daypro 600 mg- For Inflamation
Cymbalta 60 mg in am- Depression and peripheral nerve damage NEW
Duragesic patch 25 mg 1 patch every 3 days- Pain Patches
Zanaflex 2 mg 3-4 a day- Muscle spasms
Ultracet 37.5 1-4 times a day- Pain Med
I was also on Seraquel for depression- other antidepressants I had problem taking-but after seeing your list of meds that increases RLS I spoke to my family doctor- she said it was probally casuing the RLS. My phyciatrist said it wasn't and my Rheumatoidologist said it wasn't causing problem. I weaned myself off Seraquel over a period of 3 weeks and have been off it since April.
I was in a car accident and have a plate and 4 screws in my neck- fibromyalgia, chronic pain and RLS.
I'm 40 years old and sick of taking all this medication. I work part time and driving at times has been frightening- falling asleep.
I work at a hospital and got a letter of termination on Xmas eve that if I wasn't back to work I was terminated after working here for 17 years. Needless to say I went back to work which was a mistake. I work for my health insurance and then the Medication above cost me $375-$425 per month for co-pays. I work and I end up in the hole by the time I pay for scripts and other medical bills. Thank god I'm married and my husband pays my way!
What's really sick is my family Doctor wanted to put me off on disability before I went back to work but I didn't want to throw in the towel. I wished I did- financially. Now if I go off I have to be off 6 months before you can even file and I wouldn't have any health insurance while you wait. We own our own home and my huband makes good $ so I don't qualify for any kind of help with my medical bills.
You speak of maybe Iron problems when it's that time of the month. Does anyone take supplements for this. Please let me know.
I know this is a huge list of meds and I don't want to contine to take these the rest of my life. If anyone has any input as far as any other medication listed that may also be creating increased RLS please let me know.
I know when I call the doctor who prescribed the Mirapex I probally will only talk to the PA and they will probally just increase the dose without seeing me.
I think I'll give it a couple of days and see if symptoms calm down.
Any input would be greatly appreciated. Thanks for all your help and support. Talk to you guys again. Bye for now!!
Lori
POODLES RULE
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ViewsAskew
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Lori, a couple of thoughts. The pain patch should help RLS, not sure of the Ultracet, but think it's an opioid, so it should help. Looking at the other meds, there are some other high blood pressure meds that help - please look at the www.rlshelp.org site for more info on those. You might be able to switch to an RLS helpful one. So if it's worse, either:
-it's just progressing - since it is a progressive disorder, it does happen and for some of us it ebbs and flows
-a .25 dose of Mirapex wasn't enough - the dose you are taking is low, the average it .5-.75 mg for RLS.
-the Mirapex is causing augmentation - making it worse, occur earlier, more frequently, or more severely. In that case, taking more might help, but it could also cause more augmentation.
-like Becat said, the Mirapex may not be the 'sole' answer. Many people write that they do better on combination therapy or "drug cocktails". A little of this with a little of that seems to work better that a lot of one thing (and it's often easier to get off of if you need to stop it)
-it's one of the other meds - again rlshelp.org may help with that and you can always write him a letter - like you said, the antidepressants are notorious for making it worse
-you're low on iron - have your ferritin levels been tested? Should be at least 50 if you have RLS (your doc is not likely to know that). Taking iron if your ferritin is high can be dangerous so please have your doctor check the ferritin levels first
-you're doing or eating something that is aggravating it - too much exercise, not enough exercise, caffeine, wine, some OTC drug like a cold med or who knows what! - people cite many things as setting it off from ice cream to sugar to gluten)
So sorry about the disability thing. That is a tough position to be in. There are lots of good posts here - it's worth it to read them for months back - lots and lots of people with info that just may help you.
Ann
-it's just progressing - since it is a progressive disorder, it does happen and for some of us it ebbs and flows
-a .25 dose of Mirapex wasn't enough - the dose you are taking is low, the average it .5-.75 mg for RLS.
-the Mirapex is causing augmentation - making it worse, occur earlier, more frequently, or more severely. In that case, taking more might help, but it could also cause more augmentation.
-like Becat said, the Mirapex may not be the 'sole' answer. Many people write that they do better on combination therapy or "drug cocktails". A little of this with a little of that seems to work better that a lot of one thing (and it's often easier to get off of if you need to stop it)
-it's one of the other meds - again rlshelp.org may help with that and you can always write him a letter - like you said, the antidepressants are notorious for making it worse
-you're low on iron - have your ferritin levels been tested? Should be at least 50 if you have RLS (your doc is not likely to know that). Taking iron if your ferritin is high can be dangerous so please have your doctor check the ferritin levels first
-you're doing or eating something that is aggravating it - too much exercise, not enough exercise, caffeine, wine, some OTC drug like a cold med or who knows what! - people cite many things as setting it off from ice cream to sugar to gluten)
So sorry about the disability thing. That is a tough position to be in. There are lots of good posts here - it's worth it to read them for months back - lots and lots of people with info that just may help you.
Ann
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Guest
UPDATE ON INCREASE OF RLS
Hi thanks for the replys. Lori here-Angelgirl.
Just an update. After looking at the reponses I did rethink my habits the last couple of weeks. I went to a car show with my husband and did alot of walking even though I sat alot inbetween it was more walking then I have been doing. As far as change in diet I didn't eat anything I don't normally eat.
I had an appt with my phychiarist for a med check. I took your medical alert cards and gave it to him to read. He most of done some reserach since the last appt- because it seemed he knew what I was dealing with. He said that a drug was just approved for RLS I couldn't remember the name and he couldn't either. I'm still not sleeping that well and what I noticed is my arms will twitch and then fall on my face. This sounds stupid even to say but my arms extent upward and then fall with no contro; down ususally hitting my face. (I have brusies on cheekbones)
I'm presently on Mirapex lowest dose which an other doctor prescripted. My phychartrist said I seemed to be in a better mood and more calm. I told him wouldn't you be upset if you had problem and every doctor had a different idea of how to treat it and no other medication I'm taking is contributing to rls.
Requip is the drug. So he's going to call me when he has more info on drug. Like I told him I don't want to add anymore pills and I know if I call about problem other doctor is just going to increase and not see me for an appt. Is anyone taking Requip.
Thanks talk you every one later.
Lori
Just an update. After looking at the reponses I did rethink my habits the last couple of weeks. I went to a car show with my husband and did alot of walking even though I sat alot inbetween it was more walking then I have been doing. As far as change in diet I didn't eat anything I don't normally eat.
I had an appt with my phychiarist for a med check. I took your medical alert cards and gave it to him to read. He most of done some reserach since the last appt- because it seemed he knew what I was dealing with. He said that a drug was just approved for RLS I couldn't remember the name and he couldn't either. I'm still not sleeping that well and what I noticed is my arms will twitch and then fall on my face. This sounds stupid even to say but my arms extent upward and then fall with no contro; down ususally hitting my face. (I have brusies on cheekbones)
I'm presently on Mirapex lowest dose which an other doctor prescripted. My phychartrist said I seemed to be in a better mood and more calm. I told him wouldn't you be upset if you had problem and every doctor had a different idea of how to treat it and no other medication I'm taking is contributing to rls.
Requip is the drug. So he's going to call me when he has more info on drug. Like I told him I don't want to add anymore pills and I know if I call about problem other doctor is just going to increase and not see me for an appt. Is anyone taking Requip.
Thanks talk you every one later.
Lori