Just finished reading all the posts under "Am so frustrated'......Some good information there.
Interesting to read about not going overboard on a combination that works...i will need to remember that!!
Also remember walking in our hall at night because if I would go to sleep i would at least fall against the wall and not hurt myself,,,,instead of walking in other parts of the house and going to sleep on my feet and fall and hit something and get hurt.
Any suggestions as to my delema now?? Need off the Mirapex as augmentation now begins about 11am. 3 weeks ago saw a 'sleep study' dr. who was recommended to me by a 'very reliable source". (think neuro I was seeing just lost interest - been trying to get off mirapex for a year & he just trys dosing it differently)
Of course I went! Told him my story...Augmentation now! Mirapex the last 3 years, Requip for 4 months !!!!! Augmentation really bad. Permax for 7 years before the Requip.
'he said many things like 'Oh you poor thing', 'We have some work to do, but help is on the way'. He ordered a sleep study and blood tests. Hubby & I were so excited when we left!! I asked him if my iron level was included. He said 'no', so I asked him to check it. Went to the sleep study & awake first half of the night regardless of the Mirapex. When I left the technician said I finally got some rest the later hours of the night.
Dr. called me with results.....I supposedly stop breathing on an average of 18 - 19 times an hour. Hubby says I snore but has never noticed any other signs associated with sleep apnea. Wants me to do another sleep study with the I-CAP(?) machine??? I asked about the rls and he said he would deal with one thing at a time. Reminded him that augmentation is now beginning at 11am, & keep a big piece of foam in back-seat of hubby's SUV so I can crawl back there and move around.
Have been anemic all my life......so asked him to check my iron level.
assuming he would known why, etc.
I asked the Dr. for results of my iron level is? He said it was normal and no to worry about it....and that could easily be true...am not calling him a lying person....yet I have ben anemic all my life.
Asked for a copy of results of lab tests. Goinig over it now, there is q TRANSFERRIN KEVEL.....IS THAT THE SAME THING? TRIED TO GIVE HIM THE ALGO-RYTHM FROM MAYO CLINIC & said he did not need it.
Seems like he is ignoring the RLS and focusing on the stopping breathing.
Those 18-19 times an hour could have been when I was frustrated because I had to move my legs! Seems to have no iinterest in taking me off Mirapex. Asked both me and hubby, three times if we were sure I took Requip that short time !
Am beginning to doubt him....and beinning to doubt myself! and here thought I found someone!! !
I am so frustrated
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susieandirenes
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ViewsAskew
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I had a neuro that was much like that. I really liked her. I thought she was empathetic. She seemed to "get" the whole thing (well, OK, your guy doesn't quite seem to get it all). But, she wouldn't help me get off the Mirapex.
I'm going on a limb here. You've augmented too long. Period. You must get off this drug. Period. And NOT take another DA for awhile. Period. Not trying to scare you, but too many of us here have permanently worsened RLS because some dumb doctor wouldn't get us off a DA.
You may have apnea. And, untreated, it can cause horrible things. But, two or three more weeks without treating it will not be the end of the world. But, not treating the augmentation may make things appear to be different than they really are.
My guess is that the doctor thinks that some of the PLMs (were there any?) were caused by apnea, not RLS type PLMs (PLMs are common in apnea). It also seems to me that sleep docs just are not as up on RLS as Neuros, most of the time. But neuros are definitely more obnoxious and less likely to listen. I also have noticed that the sleep docs/techs I've seen (two docs, three techs) were definitely more likely to "see" apnea, even if not there.
From what you wrote, it seems that he completely dismissed you and your concerns. More inportantly, he had his own agenda but he didn't explain it to you, or get your buy-in. Not a good sign. In my opinion (for what it's worth) you have two options. First is to just get a new doc, quickly. Second is to nicely confront the current one and see if the empathy is real, or just a mirage.
Tell him that you were impressed with his concern. That you like that he didn't blow you off. But tell him that you need a partner, because it's your body and you know it much better than anyone else. Tell him that to you, a partner in your treatment is someone who listens to you an considers what you say. Someone who offers opinions and explains why he wants to do whatever it is he is suggesting. And that will read materials you bring in that are relevant to your sitation. Explain that you will not bring in frivolous materials.
Explain that you are not a doctor and you know he knows much more than you do, but regarding this, you know that the Mirapex must be stopped before anything else is treated, because it is coloring everything else. Say that you are open to exploring apnea, but not until the Mirapex/augmentation issue is resolved. All you ask is that he respect that you also are smart - especially about your body - and can also bring something to this relationship.
Then, the really hard part. Without seeming distraught or out of control in any way, tell him that this is ruining your life. You have to appear sane and not depressed. You have to sound controlled, but you have to allow him to find empathy for your situation. If you are too controlled, he won't find empathy. You might quietly relay one or two ways that this is harming you or affecting your life. THIS IS HARD! (at least to me)
Now, look him in the eye and ask him if he is willing to be your partner.
Well, I went on too long here and you probably weren't looking for this level of detail. I hope you are not assuming I think you couldn't do this on your own. I've just been here myself and have found that some things seem to work better than others.
Oh, the transferrin level is not the same as ferritin. I don't know the details, but ferritin is a measure of your iron stores - that's what's important. I think transferrin is a delivery mechanism - a transport of some kind. I imagine it's important for some things, but it isn't something that they normally test for RLS.
I'm going on a limb here. You've augmented too long. Period. You must get off this drug. Period. And NOT take another DA for awhile. Period. Not trying to scare you, but too many of us here have permanently worsened RLS because some dumb doctor wouldn't get us off a DA.
You may have apnea. And, untreated, it can cause horrible things. But, two or three more weeks without treating it will not be the end of the world. But, not treating the augmentation may make things appear to be different than they really are.
My guess is that the doctor thinks that some of the PLMs (were there any?) were caused by apnea, not RLS type PLMs (PLMs are common in apnea). It also seems to me that sleep docs just are not as up on RLS as Neuros, most of the time. But neuros are definitely more obnoxious and less likely to listen. I also have noticed that the sleep docs/techs I've seen (two docs, three techs) were definitely more likely to "see" apnea, even if not there.
From what you wrote, it seems that he completely dismissed you and your concerns. More inportantly, he had his own agenda but he didn't explain it to you, or get your buy-in. Not a good sign. In my opinion (for what it's worth) you have two options. First is to just get a new doc, quickly. Second is to nicely confront the current one and see if the empathy is real, or just a mirage.
Tell him that you were impressed with his concern. That you like that he didn't blow you off. But tell him that you need a partner, because it's your body and you know it much better than anyone else. Tell him that to you, a partner in your treatment is someone who listens to you an considers what you say. Someone who offers opinions and explains why he wants to do whatever it is he is suggesting. And that will read materials you bring in that are relevant to your sitation. Explain that you will not bring in frivolous materials.
Explain that you are not a doctor and you know he knows much more than you do, but regarding this, you know that the Mirapex must be stopped before anything else is treated, because it is coloring everything else. Say that you are open to exploring apnea, but not until the Mirapex/augmentation issue is resolved. All you ask is that he respect that you also are smart - especially about your body - and can also bring something to this relationship.
Then, the really hard part. Without seeming distraught or out of control in any way, tell him that this is ruining your life. You have to appear sane and not depressed. You have to sound controlled, but you have to allow him to find empathy for your situation. If you are too controlled, he won't find empathy. You might quietly relay one or two ways that this is harming you or affecting your life. THIS IS HARD! (at least to me)
Now, look him in the eye and ask him if he is willing to be your partner.
Well, I went on too long here and you probably weren't looking for this level of detail. I hope you are not assuming I think you couldn't do this on your own. I've just been here myself and have found that some things seem to work better than others.
Oh, the transferrin level is not the same as ferritin. I don't know the details, but ferritin is a measure of your iron stores - that's what's important. I think transferrin is a delivery mechanism - a transport of some kind. I imagine it's important for some things, but it isn't something that they normally test for RLS.
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.
S, Sorry things are not going well for you at this time. From your post, I think you did a nice job of getting some of your wants/needs across. Don't know if the next time you see your doc or call him maybe you could tell him something to the effect that you understand and appreciate his desire to do one thing at a time but that you need some help with the augmentation that you are experiencing and that you feel you can no longer continue with the Mirapex/Requip and would he please help you with the issue now. Hopefully he/she will listen and be a bit more responsive. Not sure about stopping the med on your own without something else to put in its place. Others may have more bet suggestions. Sometimes, particularly when you are in such a bad place, you may have to advocate for yourself more directly. Best of luck.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
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susieandirenes
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OK - you have given me so much to go on.
Forgot to add that I'm on 3mg. Mirapex a day.
Thanks for the 'script'. It put in writing - in order - a lot of what I already knew - but did not know how to get across. I'll put it together - on paper - this weekend. One for the asst. and one for the dr.
Don't think it's gonna work out to see this same sleep guy, but will give it a go, just in case......I realize now that his concern was likely being pretty condencending, and that
makes me angry because not only has he messed up with the rls, but my insurance has been charged for what he has done......and will not want to pay for more office visits to new docs.
I'm about ready to call every neuro's office in town and ask for the person who would know most about how each doc in the group actually works with pts. and is educated in rls.
Does this sound logical?
Share my concerns in above paragraph.
Ask to set up an appt. with the right person in the office.
At that appt. share enough to find out about the docs in the group and ask some direct questions.
The problem is that it takes so long to get in as a new patient......but suppose I could make appts. with quite a few docs.
Also - what about that much Vicadin?
This discussion board and what I find here is a treasure house!
Those of you who are in your own home, at a simple desk, taking the time to type for a bit, then sending it out without ever seeing where it goes.........MAKES A DIFFERENCE!
Just know you are making a difference!
Some of you may want to print this off.....in big type......in color.....and put it somewhere that you see it when you question your input....
from a fellow rls discussion board person:
THANK YOU! YOUR SHARING HAS MADE A DIFFERENCE!
YOU ARE APPRECIATED!
Am going to start adding a saying I like. Don't mean it to be critical......
When I can't change something.....It gives me new perspective!
You see what you look for....
Sue
Forgot to add that I'm on 3mg. Mirapex a day.
Thanks for the 'script'. It put in writing - in order - a lot of what I already knew - but did not know how to get across. I'll put it together - on paper - this weekend. One for the asst. and one for the dr.
Don't think it's gonna work out to see this same sleep guy, but will give it a go, just in case......I realize now that his concern was likely being pretty condencending, and that
makes me angry because not only has he messed up with the rls, but my insurance has been charged for what he has done......and will not want to pay for more office visits to new docs.
I'm about ready to call every neuro's office in town and ask for the person who would know most about how each doc in the group actually works with pts. and is educated in rls.
Does this sound logical?
Share my concerns in above paragraph.
Ask to set up an appt. with the right person in the office.
At that appt. share enough to find out about the docs in the group and ask some direct questions.
The problem is that it takes so long to get in as a new patient......but suppose I could make appts. with quite a few docs.
Also - what about that much Vicadin?
This discussion board and what I find here is a treasure house!
Those of you who are in your own home, at a simple desk, taking the time to type for a bit, then sending it out without ever seeing where it goes.........MAKES A DIFFERENCE!
Just know you are making a difference!
Some of you may want to print this off.....in big type......in color.....and put it somewhere that you see it when you question your input....
from a fellow rls discussion board person:
THANK YOU! YOUR SHARING HAS MADE A DIFFERENCE!
YOU ARE APPRECIATED!
Am going to start adding a saying I like. Don't mean it to be critical......
When I can't change something.....It gives me new perspective!
You see what you look for....
Sue
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ViewsAskew
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Sue - my thoughts. Again, I'm not a doc, but 3 MG of Mirapex is waaaay toooooo much.
You've got the Vicodin. Good. You're going to need it. And, possibly the methadone he mentioned. JUST for a LITTLE while. Then you can reassess. Sounds like he may know what he's talking about. . .just can't explain it very well.
See, these opioids are wonder drugs (for many of us) for getting off the augmentation merry-go-round. If you think your RLS is bad now, wait until you stop the Mirapex
. Not to scare you, but it's not fun.
A strong opioid is what will allow you to get through the withdrawal period.
First thing is to start reducing the Mirapex. . .if it were me, I'd do it tonight. You can safely reduce it by .5 mg tonight. Add the Vicodin. See what happens. Reduce the Mirapex every 2 nights by .5. You may need to use more Vicodin. Since I am allergic to it, I don't know how much to take. . .but Dr Buchfurer's book says 2.5 to 10 mg every 4-6 hours.
Once you have completely stopped the Mirapex, then you can see what dosage of Vicodin helps. And, it may not help enough. If it doesn't, the methadone will.
It takes from a few days to several weeks to move through this period.
Once your augmentation is gone, you and the doc can decide what to do next: stay on an opioid or use another dopamine agonist or try something completely different.
You've got the Vicodin. Good. You're going to need it. And, possibly the methadone he mentioned. JUST for a LITTLE while. Then you can reassess. Sounds like he may know what he's talking about. . .just can't explain it very well.
See, these opioids are wonder drugs (for many of us) for getting off the augmentation merry-go-round. If you think your RLS is bad now, wait until you stop the Mirapex
. Not to scare you, but it's not fun.
A strong opioid is what will allow you to get through the withdrawal period.
First thing is to start reducing the Mirapex. . .if it were me, I'd do it tonight. You can safely reduce it by .5 mg tonight. Add the Vicodin. See what happens. Reduce the Mirapex every 2 nights by .5. You may need to use more Vicodin. Since I am allergic to it, I don't know how much to take. . .but Dr Buchfurer's book says 2.5 to 10 mg every 4-6 hours.
Once you have completely stopped the Mirapex, then you can see what dosage of Vicodin helps. And, it may not help enough. If it doesn't, the methadone will.
It takes from a few days to several weeks to move through this period.
Once your augmentation is gone, you and the doc can decide what to do next: stay on an opioid or use another dopamine agonist or try something completely different.
Last edited by ViewsAskew on Fri Aug 24, 2007 4:52 pm, edited 1 time in total.
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.
Umm . . . did I miss something I didn't see anywhere in her post where she mentioned methadone (?)
Also, you may want to edit your post above I think you meant to say "Reduce the Mirapex every two nights by .5" but you typed "reduce the Vidodin".
Also, you may want to edit your post above I think you meant to say "Reduce the Mirapex every two nights by .5" but you typed "reduce the Vidodin".
Last edited by KBear on Fri Aug 24, 2007 5:00 pm, edited 1 time in total.
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ViewsAskew
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She emailed me and told me about the methadone. I told her I would reply in the thread.
Thanks for the heads up about the typo!
Thanks for the heads up about the typo!
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.
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SquirmingSusan
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susieandirenes wrote:
This discussion board and what I find here is a treasure house!
Those of you who are in your own home, at a simple desk, taking the time to type for a bit, then sending it out without ever seeing where it goes.........MAKES A DIFFERENCE!
Just know you are making a difference!
Some of you may want to print this off.....in big type......in color.....and put it somewhere that you see it when you question your input....
from a fellow rls discussion board person:
THANK YOU! YOUR SHARING HAS MADE A DIFFERENCE!
YOU ARE APPRECIATED!
Sue
Thanks for that Sue. Lately I've wondered if all this verbiage is helpful to anyone.
OTOH, you got me to reread the beginning of this post. Holy cow was I in bad shape back then when I wrote that!!! Now it's about 5 months later, and I'm doing much, much better. I'm not at 100% yet, and I can't always sleep at night when I'd like to, but things are so much better than they were. I'm actually thinking about looking for work and moving on with my life.
I've had super aggressive treatment, and tried just about every medication out there, along with physical therapy for the pain, and iron infusions to boost my iron stores. But I'm at a point where I think I could pull off working maybe half to 3/4 time in my field.
I just wanted to post that in case someone reads the beginning of this thread and assumes that it's hopeless. It's not! But it takes a lot of changing doctors, and a lot of trial and error with the various treatments options.
So those of you who are really having a tough time with it: Hang in there and don't give up. You can regain a lot of your quality of life. Really.
Susan
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ViewsAskew
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That's a great post, Susan. And wonderful to hear. I hope it continues to improve for you.
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.
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susieandirenes
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A couple of things.....
It sounds like I'm going to be facing some tough times with this fiasco, so
I appreciate your telling your stories Susan. They are good 'hand in there' stories, first-hand.
Could not find my Mirapex tonight, so took half a vicadin...guess I'll see how that works, huh?
Ann...should I start going off the Mirapex without working with a doc?
My next appt with the sleep doc is in about 2 weeks, and he is out of town until then. I think I will keep that appt. and follow your suggestions on how to 'lay-it-out' and see just what he does with it.
Also before this week is over I am going to call some neuro's offices with a list of questions....
-who would be the person in your office that would be most
familiar with how the docs work with their patients?
and when I get to that person....
- explain briefly that I'm having a tough time getting my rls under
control..... and need a neuro that is already familiar with rls.
.....or is truly willing to learn and work with me in getting this
under control.
- and use some of the suggestions you gave me to figure out if I
want to make an appt.
Also, Eliza suggested I let people know what area I am in.....on the chance that someone out there may know of a good rls. doc.
Any input from anyone else?
I have never done that....however....desperate times may call for desperate measures.
Boy ! that Vicadin sure is not making me 'wired'....it has become a struggle to finish this e-mail....can't imagine using it during the day....especially with 5 - 6 hours sleep a night....and tomorrow is a work day so I have to get up at 6:30am....
Will probably just hit the bed, clothes and all....Oh Well ! ! !
Sue
"You see what you look for!" that saying is one of those love/hate things for me.....love what it says.....sometimes hate where the responsibility falls![/list]
It sounds like I'm going to be facing some tough times with this fiasco, so
I appreciate your telling your stories Susan. They are good 'hand in there' stories, first-hand.
Could not find my Mirapex tonight, so took half a vicadin...guess I'll see how that works, huh?
Ann...should I start going off the Mirapex without working with a doc?
My next appt with the sleep doc is in about 2 weeks, and he is out of town until then. I think I will keep that appt. and follow your suggestions on how to 'lay-it-out' and see just what he does with it.
Also before this week is over I am going to call some neuro's offices with a list of questions....
-who would be the person in your office that would be most
familiar with how the docs work with their patients?
and when I get to that person....
- explain briefly that I'm having a tough time getting my rls under
control..... and need a neuro that is already familiar with rls.
.....or is truly willing to learn and work with me in getting this
under control.
- and use some of the suggestions you gave me to figure out if I
want to make an appt.
Also, Eliza suggested I let people know what area I am in.....on the chance that someone out there may know of a good rls. doc.
Any input from anyone else?
I have never done that....however....desperate times may call for desperate measures.
Boy ! that Vicadin sure is not making me 'wired'....it has become a struggle to finish this e-mail....can't imagine using it during the day....especially with 5 - 6 hours sleep a night....and tomorrow is a work day so I have to get up at 6:30am....
Will probably just hit the bed, clothes and all....Oh Well ! ! !
Sue
"You see what you look for!" that saying is one of those love/hate things for me.....love what it says.....sometimes hate where the responsibility falls![/list]
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susieandirenes
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- Joined: Thu Jul 27, 2006 7:00 pm
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Have a question - and maybe this is just how things go on the forum -
I realize everything in 'so frustrated' fits together, from beginning to end, and am so thankful that I took the time to read all of the posts, yet I could have easily missed the help toward the end if I had not been diligent enough. Just wondering if at some point this should be a new
posting since it started in Nov. 2006 and people might not realize it is
still being used....or does it's place in the postings tell that?
Just wondering in my sleepiness and half haze.....
Sue
"You see what you look for!" (not even real sure what I'm looking for right now.)
I realize everything in 'so frustrated' fits together, from beginning to end, and am so thankful that I took the time to read all of the posts, yet I could have easily missed the help toward the end if I had not been diligent enough. Just wondering if at some point this should be a new
posting since it started in Nov. 2006 and people might not realize it is
still being used....or does it's place in the postings tell that?
Just wondering in my sleepiness and half haze.....
Sue
"You see what you look for!" (not even real sure what I'm looking for right now.)
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ViewsAskew
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Sue, I wish I could tell you what to do, but I don't have the answer. Only you can figure out if it's the right thing. I can only tell you what I would do. Given what I went through, and had I known then what I know now, I would do anything to stop the Mirapex ASAP. But, that's me. Many of us wouldn't dream of "self-medicating" and there are inherent risks in it. Others of us feel that we know our bodies better, so if we are armed with knowledge, we can't do worse than the doctor who doesn't even listen to us!
I hope the Vicodin helps. Stopping all 3 mg of the Mirapex at one time may esxact a steep cost, though. I haven't read anywhere that it is dangerous, though it might be worth looking that up and Josh or someone else may know just to make sure.
In terms of calling offices, I'm not sure what I did was best, but it seemed to work. I asked for the doctor's nurse. S/he usually knew the doc pretty well. In one case, she knew that the doc I called about in that office wasn't the best fit, so she actually asked the doc that was the best fit (but not on my insurance) who he would recommend.
If you can swing it, I'd be bold and after you get a good idea of if this doctor may work, to ask to talk to the doctor for just a couple of minutes. How many difficult cases has s/he treated? Is s/he willing to use all categories of drugs listed on the algorithm? I still laugh when I remember my first neuro telling me what an expert he was. . .he didn't even know what augmentation was!
I hope the Vicodin helps. Stopping all 3 mg of the Mirapex at one time may esxact a steep cost, though. I haven't read anywhere that it is dangerous, though it might be worth looking that up and Josh or someone else may know just to make sure.
In terms of calling offices, I'm not sure what I did was best, but it seemed to work. I asked for the doctor's nurse. S/he usually knew the doc pretty well. In one case, she knew that the doc I called about in that office wasn't the best fit, so she actually asked the doc that was the best fit (but not on my insurance) who he would recommend.
If you can swing it, I'd be bold and after you get a good idea of if this doctor may work, to ask to talk to the doctor for just a couple of minutes. How many difficult cases has s/he treated? Is s/he willing to use all categories of drugs listed on the algorithm? I still laugh when I remember my first neuro telling me what an expert he was. . .he didn't even know what augmentation was!
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.
susieandirenes wrote:Also, Eliza suggested I let people know what area I am in.....on the chance that someone out there may know of a good rls. doc. Any input from anyone else? I have never done that....however....desperate times may call for desperate measures.
I wouldn't advise giving out your address and phone number but it is generally safe to give out a city and state or what part of a state you live in. For example I am comfortable saying that I live in central Wisconsin since that description applies to a few million people and I'm sure there are several thousand named "Kathy". Ann is in "Chicago" once again several million people live in the Chicago area so there really is very little chance someone is going to track her down out of the several thousand "Anns" that live in Chicago.
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susieandirenes
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susieandirenes
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Interesting thing happened last night;....I could not find my Mirapex anywhere!..... Finally at about 1am I took a Vicadin.
(And by the way....from being easily frustrated right now....I've come up with an easy, cost free way to end bending over the computer keyboard and continually having to correct the wrong keys, and trying to read the monitor from an angle while kicking and rocking from side to side.
I got my ironing board out of the closet and set them up on it.
THIS IS GREAT!)
Back to last night. The Vicadin lasted til about 4:30, and I took another one. Was still restless, but at least I got some sleep.
Did not notice my legs being any worse today than usual...they are just
wanting to move a lot, like every 10-15 seconds. (Ate supper at Ruby Tuesdays & went to the restroom 4 times, shoes off and on quite a few times, one leg up on the seat, then under me, then down, then the other leg, I'm sure you all know the drill.)
Found the Mirapex today....and instead of taking 3mg. I think I'm just going take 1.5mg tonight, along with the vicadin and do that for several nights, then go to .5 for several nights, or none and just depend on the vicadin.
My next appt with the questionable sleep doc is the 14 or 15 of Sept, so I have a couple weeks to go on my own. (During that time we will fly to
Fla. to visit our 7week old grandson).
Spent a lot of time last evening and night on this computer, reading and reading and reading.
Found RLS rebel's web site. I think that will be very helpful and printing off a lot of stuff so I have it on hand.
Am not afraid of the time period to reset.....know it will be miserable....but have been miserable and survived before...
Am just going to take charge of my nutrition level and, have my 'helps'
and face it (and the doc in 2 weeks) head on. Somewhat carefully, but firmly.
Thanks again! don't mean to wear that out, but I would not be here if it were not for the help I have received from this discussion board.
Have a couple other items, will enter seperately.
Sue
"You see what you look for!"
(And by the way....from being easily frustrated right now....I've come up with an easy, cost free way to end bending over the computer keyboard and continually having to correct the wrong keys, and trying to read the monitor from an angle while kicking and rocking from side to side.
I got my ironing board out of the closet and set them up on it.
THIS IS GREAT!)
Back to last night. The Vicadin lasted til about 4:30, and I took another one. Was still restless, but at least I got some sleep.
Did not notice my legs being any worse today than usual...they are just
wanting to move a lot, like every 10-15 seconds. (Ate supper at Ruby Tuesdays & went to the restroom 4 times, shoes off and on quite a few times, one leg up on the seat, then under me, then down, then the other leg, I'm sure you all know the drill.)
Found the Mirapex today....and instead of taking 3mg. I think I'm just going take 1.5mg tonight, along with the vicadin and do that for several nights, then go to .5 for several nights, or none and just depend on the vicadin.
My next appt with the questionable sleep doc is the 14 or 15 of Sept, so I have a couple weeks to go on my own. (During that time we will fly to
Fla. to visit our 7week old grandson).
Spent a lot of time last evening and night on this computer, reading and reading and reading.
Found RLS rebel's web site. I think that will be very helpful and printing off a lot of stuff so I have it on hand.
Am not afraid of the time period to reset.....know it will be miserable....but have been miserable and survived before...
Am just going to take charge of my nutrition level and, have my 'helps'
and face it (and the doc in 2 weeks) head on. Somewhat carefully, but firmly.
Thanks again! don't mean to wear that out, but I would not be here if it were not for the help I have received from this discussion board.
Have a couple other items, will enter seperately.
Sue
"You see what you look for!"