This is a very bad day - I woke up with tremors, which I have been experiencing in the mornings, but they normal subside while in the shower and don't return.
Today I am having trouble clicking the mouse on buttons, and typing is like moving a glacier. Has anyone else had tremors show up? This is not urge to move, like my RLS normal is, this is movement without any cause. It's just happening.
I'm on .25mg mirapex 2x/day, with lorazepam to aid sleep if needed, and I've been using up gabapentin occasionally as needed for the really rough nights. Haven't used either for about a week.
Any thoughts? I'll also add that I am extremely stressed at work with an unachievable deadline.
Jerkingly - Greg
Tremors
Greg, I am not on any of the medication you are currently taking so I cannot comment on their side-effects. However, I would think that regardless of what others may have experienced with these medications or rls in general a call to your doctor as soon as possible would be prudent if not mandatory. While stress could be a possiblility that would not change my suggestion to you. In my opinion, I think the adage "Error on the side of caution" is in order! Please let us know how you are doing. Best of luck.
M.
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
I was on Mirapex until last week. .25 at lunch time and .50 before bed.
It controlled the nighttime restlessness well, but I started to get tremors in my legs and trunk and weakness in my legs during the daytime.
I stopped taking it Friday night and haven't had the daytime symptoms but the restlessness at night has come back.
It seems to be worst when I'm at work, so one other possibility is that my chair/posture is aggravating the condition.
It controlled the nighttime restlessness well, but I started to get tremors in my legs and trunk and weakness in my legs during the daytime.
I stopped taking it Friday night and haven't had the daytime symptoms but the restlessness at night has come back.
It seems to be worst when I'm at work, so one other possibility is that my chair/posture is aggravating the condition.
--Haggi
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ViewsAskew
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I had a similar experience with Mirapex. For me, though, it started within a week of taking it - probably on the 2nd or 3rd day. Since I do a lot of keyboard and mousing in relation to my job, I was freaked - everytime I'd sit in front of it and put my hands over it, I had these tremors. It was very scary.
I saw my neuro about it after a week of it (a scheduled appointment). He said it was normal for Mirapex. Yeesh. He said not to worry about it. I still have slight tremors every once in awhile (not like then) and I stopped it over two years ago.
Of course, this was my experience...I'd want to call the neuro and at least get an email of over the phone discussion about it.
I saw my neuro about it after a week of it (a scheduled appointment). He said it was normal for Mirapex. Yeesh. He said not to worry about it. I still have slight tremors every once in awhile (not like then) and I stopped it over two years ago.
Of course, this was my experience...I'd want to call the neuro and at least get an email of over the phone discussion about it.
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.
I scheduled an appointment with my doctor for tomorrow morning - I am going to ask for a referral for a neuro consult. This wasn't just minor shaking of my hands - arms, legs, head, i felt like someone else was controlling everything and didn't know what they were doing. It's subsided quite a bit right now, but every few minutes theres a major movement I didn't initiate. We'll see where this leads.
Thanks for the replies all.
Greg
Thanks for the replies all.
Greg
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SquirmingSusan
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When I augmented on Requip, I developed what's called "myoclonic jerks." It's random jerking of random body parts, and they can be quite violent. They've settled down a lot, but I still have several good ones per hour, especially if I'm trying to relax.
Actually the term "myoclonic jerks" was changed to Periodic limb movements, but not all "jerks" are periodic. Mine are very random. Besides, I like the sound of "myoclonic jerk."
Anyway, I hope you get some answers from the neurologist.
Actually the term "myoclonic jerks" was changed to Periodic limb movements, but not all "jerks" are periodic. Mine are very random. Besides, I like the sound of "myoclonic jerk."
Anyway, I hope you get some answers from the neurologist.
Susan
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mackjergens
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I once watch a show with Michael J. Fox talking about his Parkinsons. The med he was using was Sinemet(Carbo-Lev) he talked about how this med would cause his body to really jerk if he got to much into his system and how hard it was to get just the amount of med to stop the shaking without getting too much that then caused the jerking.
I wonder if all Parkinson meds will have this affect? I have never taken any of the Parkinson meds, but I am beginning to wonder about how affective they really are, if they stop one problem but start another, is this worth it?
I wonder if all Parkinson meds will have this affect? I have never taken any of the Parkinson meds, but I am beginning to wonder about how affective they really are, if they stop one problem but start another, is this worth it?
Update - Saw the Dr. today - he's baffled. So he took me off the Mirapex and scheduled a consult with a neuro. That is Weds. I am supposed to call him tomorrow to let him know how I'm doing. He said he'd give me something if I am miserable. I can already tell I'm going to be. Oh well. Can only do what you can do and take the rest in stride.
Greg
Greg
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ViewsAskew
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Thank goodness he's listening.
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.
I've now been off Mirapex for 7 days.
My daytime symptoms are a lot better and are no longer scaring me. The restlessness has returned, but the tremor and stiffness in my legs is greatly reduced.
The restlessness at night has also returned. I haven't needed to take my Ativan though.
I seem to have more energy, and don't feel as fatigued as I did on the Mirapex. My appetite is better too.
I see the neuro next week and I'll provide an update then.
My daytime symptoms are a lot better and are no longer scaring me. The restlessness has returned, but the tremor and stiffness in my legs is greatly reduced.
The restlessness at night has also returned. I haven't needed to take my Ativan though.
I seem to have more energy, and don't feel as fatigued as I did on the Mirapex. My appetite is better too.
I see the neuro next week and I'll provide an update then.
--Haggi
UPDATE
<dr nick> Hey everybody! </dr nick>
(Simpson's reference for those who don't get that...)
Just got discharged from the hospital this evening. I went to the neuro yesterday morning and he had me admitted immediately following his examination. Following MRIs, X-rays and enough blood work to make the Red Cross jealous, everything came back normal, but last night he ordered me onto Klonopin. This morning (after being awakened at the nurses shift change being directed that I MUST urinate...the tremors were greatly reduced. Legs are still going but not nearly as bad. He said in his research he found a few occurences of Mirapex causing this reaction, but it was exceedinly rare. So I am permanently off DA's and on Klonopin for now. I have another appointment in 4 weeks.
As a final test (since everything else came back normal) we did a spinal tap to rule out encephalytis (sp?) and the preliminary results on that came back good. I'm glad I opted to do it while he was in the hospital on rounds as I would not have wanted ANYONE else to do that to me. He was very apologetic for the nerve pain he caused during the procedure since it wasn't flowing as well as is typical. I nearly kicked the nurse who held me still. Not something I want to repeat, but I am relieved that was ruled out. I can hold my hands steady again, and the expectation is the Mirapex is still working out of the system.
Note to anyone considering any of the DA's - don't let my experience scare you - as he indicated my reaction was EXCEEDINGLY rare and the Mirapex DID work wonderfully for a couple months which is why they wanted to do so many tests (the bill on this should be a fun one to digest when it comes...)
If anyone in Northwest Ohio is interested in a specialist, though this doctor and his his group don't consider themselves specialists in RLS, I would be glad to highly recommend them - the doctor listened and explained what they were doing, what they were looking for, how things worked and had an excellent bedside manner. Toledo Neurological Associates - I saw Dr. Calderon in the office and Dr. Loomus in the hospital. Both were some of he best doctors I've seen and been around. Even the two different roomates I had commented they were impressed with Dr. Loomus' care.
Sorry to ramble on, but wanted to share my progress.
Greg
(Simpson's reference for those who don't get that...)
Just got discharged from the hospital this evening. I went to the neuro yesterday morning and he had me admitted immediately following his examination. Following MRIs, X-rays and enough blood work to make the Red Cross jealous, everything came back normal, but last night he ordered me onto Klonopin. This morning (after being awakened at the nurses shift change being directed that I MUST urinate...the tremors were greatly reduced. Legs are still going but not nearly as bad. He said in his research he found a few occurences of Mirapex causing this reaction, but it was exceedinly rare. So I am permanently off DA's and on Klonopin for now. I have another appointment in 4 weeks.
As a final test (since everything else came back normal) we did a spinal tap to rule out encephalytis (sp?) and the preliminary results on that came back good. I'm glad I opted to do it while he was in the hospital on rounds as I would not have wanted ANYONE else to do that to me. He was very apologetic for the nerve pain he caused during the procedure since it wasn't flowing as well as is typical. I nearly kicked the nurse who held me still. Not something I want to repeat, but I am relieved that was ruled out. I can hold my hands steady again, and the expectation is the Mirapex is still working out of the system.
Note to anyone considering any of the DA's - don't let my experience scare you - as he indicated my reaction was EXCEEDINGLY rare and the Mirapex DID work wonderfully for a couple months which is why they wanted to do so many tests (the bill on this should be a fun one to digest when it comes...)
If anyone in Northwest Ohio is interested in a specialist, though this doctor and his his group don't consider themselves specialists in RLS, I would be glad to highly recommend them - the doctor listened and explained what they were doing, what they were looking for, how things worked and had an excellent bedside manner. Toledo Neurological Associates - I saw Dr. Calderon in the office and Dr. Loomus in the hospital. Both were some of he best doctors I've seen and been around. Even the two different roomates I had commented they were impressed with Dr. Loomus' care.
Sorry to ramble on, but wanted to share my progress.
Greg
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ViewsAskew
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Greg, that is a wonderful story - to find out what it was, have a doctor so willing to go to bat for you and get to the bottom of it. I am so glad that it turned out this way. You know what caused it and it's completely reversable.
I hope the Klonopin works well for you to control everything. If it doesn't, at least it sounds like it will help you control the tremors until they stop and your doc sounds like the type to help you find a med that does work.
I hope the Klonopin works well for you to control everything. If it doesn't, at least it sounds like it will help you control the tremors until they stop and your doc sounds like the type to help you find a med that does work.
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.
Greg, My eyes, my eyes (seem to be seeing red lately) 
Hey, great news! Always glad to hear from folks who have received good medical care and it sounds like you did. Hope the Klonopin helps and that whatever else transpires down the line with help you get the peace and rest you deserve. Continued best of luck to you, my friend.
M.
Hey, great news! Always glad to hear from folks who have received good medical care and it sounds like you did. Hope the Klonopin helps and that whatever else transpires down the line with help you get the peace and rest you deserve. Continued best of luck to you, my friend.
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
Well night one home from the hospital was bearable, but the dosages sent home were of course lower than under monitored care. So there's a call back coming to them once they open.
Also the site of the spinal tap is in pain, which affects my lower back. All my research indicates that is typically a nonconcern, everything speaks of the utter importance of sterility and suppine relaxation for hours following to minimize risk of a spinal headache which evidently can be extremely painful.
I got some sleep but not as much as wanted. Of course, as everyone else here endures, the saga continues and we trudge on.
ps - Mark sorry about the red, just wanted to make sure I don't dissuade anyone from something that did work well, rather that I was a part of that minority that can't do the DAs. And gota love your disclaimer signature - is that valid in Rhode Island, Pennsylvania and Guam too? lol
Also the site of the spinal tap is in pain, which affects my lower back. All my research indicates that is typically a nonconcern, everything speaks of the utter importance of sterility and suppine relaxation for hours following to minimize risk of a spinal headache which evidently can be extremely painful.
I got some sleep but not as much as wanted. Of course, as everyone else here endures, the saga continues and we trudge on.
ps - Mark sorry about the red, just wanted to make sure I don't dissuade anyone from something that did work well, rather that I was a part of that minority that can't do the DAs. And gota love your disclaimer signature - is that valid in Rhode Island, Pennsylvania and Guam too? lol