I'm sorry Ruby. I offend a lot of people with my sense of humor. There is nothing wrong with Requip and Mirapex if it helps a person! He had tried all that, so I was working it from that angle. But sorry indeed to those who are helped by ALL the medications out there!!!
GG
Sound triggers?
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woodsie357
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Thank you so much for your warm replys. It's refreshing to have a group of people that understand. I was just laughing to myself tonight about the people who find out about my sleep disorder and tell me I should just go to bed. The last neurologist I saw told me to talk to my religious leader. Which I guess isn't a bad suggestion, but my religious leader doesn't know RLS from a hole in the ground, and wasn't much help lol. I've been awake for 2 days now, my appointment is tomorrow but I've got so much .... I don't know what to call it, I guess I'd call it excitement, like finally I get to see someone that knows enough not to tell me I'm just depressed and stressed, and to try to relax. I did live in a very small town, and we did have Doctors and I'm sure they are all very smart. What do they say... experience is everything. Sorry I don't mean to drag on, I'm just in such anticipation with my appointment tomorrow.
Someone cares about your sleepless nights
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SquirmingSusan
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Your neuro told you to talk to your religious leader???!!! Your neurologist is supposed to treat you so that you're not in so much distress that you need to talk to your religious leader about it!
And those people who tell me to just go to bed - well, yeah, right! We need to think of some kind of snarky reply to those people, something like, "why don't you just go to the moon?" Or "and do what in bed?"
As my SIL likes to say, "some people are dummer than anyone." LOL.
And those people who tell me to just go to bed - well, yeah, right! We need to think of some kind of snarky reply to those people, something like, "why don't you just go to the moon?" Or "and do what in bed?"
As my SIL likes to say, "some people are dummer than anyone." LOL.
Susan
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ViewsAskew
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Woodsie, I wanted to laugh, cry, and scream at the same time reading that comment. Your religious leader? Let's see....rabbi....minister....priest. Is that like wondering between the sleep doctor, the neurologist or the internist?
Crazy.
For what it's worth, while I am so thrilled you are going tomorrow (and extraordinarily envious), just hold onto a dash of skepticism. So many of us have had high hopes only to have them dashed. I think this will work...but just in case, keep one toe in the, "We'll see," camp. It's easier to take the let down just in case something happens.
That sounds like such a downer. I don't mean it that way, truly.
Crazy.
For what it's worth, while I am so thrilled you are going tomorrow (and extraordinarily envious), just hold onto a dash of skepticism. So many of us have had high hopes only to have them dashed. I think this will work...but just in case, keep one toe in the, "We'll see," camp. It's easier to take the let down just in case something happens.
That sounds like such a downer. I don't mean it that way, truly.
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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Polar Bear
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Good luck Woodsie, we will wait eagerly to hear how you get on with doc.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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woodsie357
- Posts: 147
- Joined: Wed Feb 04, 2009 7:54 am
ROFL guys!! Yes I saw my new Dr. And I'm very sorry I didn't come on and type about it until now.
He was great. I think he new more about my situation then I did, he read my mind.
Now due to my lack of memory I can't recall everything but I will try to give you the highlights. I got there 1 hour early, and I'm glad I did. I got sent to the wrong office, then to the actual Doctors office where his desk and computer was. Thank goodness he wasn't in there that would have been a woot. Anyway another Dr found me wandering around where I shouldn't have been and walked me up to the door... right behind the security guard that gave me directions to his desk lol.
Then the line to check in was 20 mins long and I ended up being late. I saw his picture on the internet the night before my appointment so I knew what he looked like. He came out looking for his late patient and I smiled and waved to him lol.
Once I got into his office he asked me how much I slept in a week. I said 8 hours. And went on to tell him how I had not slept even 1 min the whole weekend. Then he said let me rephrase my question because I don't think you understood it. How much time to you sleep in one night, "OH LOL not 8 hours, I bet you were wondering why the heck I was here if I slept 8 hours a night." He laughed a bit.
He went on to tell me women that have had pregnancy use more iron then they can keep up with. I've had 4 kids and RLS started during my first pregnancy, returned for second, returned for 3rd and then never really went away, I had it during the time before number 4 and that period of time in my life is completely blank.
Anyway back to the appointment. He told me that he wanted me to get my iron checked and depending on the numbers I might be a candidate for IV Iron. This made me pretty excited. I could be wrong but I can't remember if he said this would take my symptoms completely away or reduce them to a tolerable level. Anything would be better then it has been for a very long time.
He talked to me about the usual Requip, Mirapex patients and how its great for 95% of people. He talked about augmentation. I brought a list of points to bring up. And told him my memory is horrible and didn't know if it was related directly to RLS or if my mind was broken.
Now I don't want to say these are direct quotes because of my memory, but this is how I remember it. He said that the majority of people with memory problems are actually sleep deprived. That people who are sleep deprived have 3 main things happen. First their memories go, then ok I forget the 2nd one. but I'm pretty sure the 3rd one was that they appear depressed and anxious. And I think he went on to say the typical Dr will treat the person for depression, anxiety, and tell them that is the cause of their memory problems, and that once their depression clears up they will sleep better. And this is what happened to me word for word.
As I sat there balling my eyes out. I said I felt like a happy person, I said I'm not a depressed person. He laughed. I told him my sense of humor is what's kept me alive. I think he got that.
He asked me or I think he asked me what other Doctors have told me, so I reported about the last 3 Doctors that have said I should be on methadone next but that they wouldn't prescribe it. He laughed again. He went on to explain about pain meds, and methadone and how they work in RLS. He said that RLS can be treated with a much lower dose of methadone then RLS + pain, or Pain in and of its self. He then gave me an RX for methadone starting at 2.5mg. He also gave me a booklet, and a list of approved websites for RLS info. I was VERY happy for the info. I've tried to read the book and got 3 or 4 pages in so far.
Ok I just forgot what I was going to type next. Anyway I didn't fill the RX the first night I seem to have a productivity delay due to my sleepless nights and just being run down, but I did fill it today and took my first pill 2 hours ago. I feel fine. I'm waiting for the 3rd hour before I try to sleep I don't want to jinx it.
It was so much better seeing him then my previous neurologist that told me to talk to my religious leader rofl. It just goes to show you that a good bit of our basic Doctors need the mayoclinic info.
Oh he said if you took the rest of the population and had them sleep on an RLS schedule they would not function at all. I told him "Oh my gosh, I think that all the time. I wouldn't wish it on my worst enemy but everyone needs to experience it for one full week of their life. If you've not felt it, you can't possibly understand it." now that I think of it I hope he didn't take that the wrong way. I know he knows what he's talking about.
He was the best Doctor ever! I thanked him for his time. I didn't go in expecting anything really I had an open mind. Open minds are pretty easy for me with my memory loss lol.
Oh I told him that I thought my memory loss was a benefit to me, I said if I had a clear memory of every night I suffered with that amount of torture I wouldn't be alive to talk about it today. Plus I don't remember that I'm mad at my husband or kids for more then a few minutes.
Hmmm maybe I don't want to get my perfect memory back lol.
Sorry if I rambled but I wanted to report back to you all. Again sorry for my delay.
I love you all. Hang in there! I care about your sleepless nights!
And YES!!! we do need to think of something to say to those people that tell us we should just go to bed. ROFL
Sleep doctor, neurologist and Internist ROFLMAO! We need to write some jokes about them walking into a bar LOLOLOLOL!!!
He was great. I think he new more about my situation then I did, he read my mind.
Now due to my lack of memory I can't recall everything but I will try to give you the highlights. I got there 1 hour early, and I'm glad I did. I got sent to the wrong office, then to the actual Doctors office where his desk and computer was. Thank goodness he wasn't in there that would have been a woot. Anyway another Dr found me wandering around where I shouldn't have been and walked me up to the door... right behind the security guard that gave me directions to his desk lol.
Then the line to check in was 20 mins long and I ended up being late. I saw his picture on the internet the night before my appointment so I knew what he looked like. He came out looking for his late patient and I smiled and waved to him lol.
Once I got into his office he asked me how much I slept in a week. I said 8 hours. And went on to tell him how I had not slept even 1 min the whole weekend. Then he said let me rephrase my question because I don't think you understood it. How much time to you sleep in one night, "OH LOL not 8 hours, I bet you were wondering why the heck I was here if I slept 8 hours a night." He laughed a bit.
He went on to tell me women that have had pregnancy use more iron then they can keep up with. I've had 4 kids and RLS started during my first pregnancy, returned for second, returned for 3rd and then never really went away, I had it during the time before number 4 and that period of time in my life is completely blank.
Anyway back to the appointment. He told me that he wanted me to get my iron checked and depending on the numbers I might be a candidate for IV Iron. This made me pretty excited. I could be wrong but I can't remember if he said this would take my symptoms completely away or reduce them to a tolerable level. Anything would be better then it has been for a very long time.
He talked to me about the usual Requip, Mirapex patients and how its great for 95% of people. He talked about augmentation. I brought a list of points to bring up. And told him my memory is horrible and didn't know if it was related directly to RLS or if my mind was broken.
Now I don't want to say these are direct quotes because of my memory, but this is how I remember it. He said that the majority of people with memory problems are actually sleep deprived. That people who are sleep deprived have 3 main things happen. First their memories go, then ok I forget the 2nd one. but I'm pretty sure the 3rd one was that they appear depressed and anxious. And I think he went on to say the typical Dr will treat the person for depression, anxiety, and tell them that is the cause of their memory problems, and that once their depression clears up they will sleep better. And this is what happened to me word for word.
As I sat there balling my eyes out. I said I felt like a happy person, I said I'm not a depressed person. He laughed. I told him my sense of humor is what's kept me alive. I think he got that.
He asked me or I think he asked me what other Doctors have told me, so I reported about the last 3 Doctors that have said I should be on methadone next but that they wouldn't prescribe it. He laughed again. He went on to explain about pain meds, and methadone and how they work in RLS. He said that RLS can be treated with a much lower dose of methadone then RLS + pain, or Pain in and of its self. He then gave me an RX for methadone starting at 2.5mg. He also gave me a booklet, and a list of approved websites for RLS info. I was VERY happy for the info. I've tried to read the book and got 3 or 4 pages in so far.
Ok I just forgot what I was going to type next. Anyway I didn't fill the RX the first night I seem to have a productivity delay due to my sleepless nights and just being run down, but I did fill it today and took my first pill 2 hours ago. I feel fine. I'm waiting for the 3rd hour before I try to sleep I don't want to jinx it.
It was so much better seeing him then my previous neurologist that told me to talk to my religious leader rofl. It just goes to show you that a good bit of our basic Doctors need the mayoclinic info.
Oh he said if you took the rest of the population and had them sleep on an RLS schedule they would not function at all. I told him "Oh my gosh, I think that all the time. I wouldn't wish it on my worst enemy but everyone needs to experience it for one full week of their life. If you've not felt it, you can't possibly understand it." now that I think of it I hope he didn't take that the wrong way. I know he knows what he's talking about.
He was the best Doctor ever! I thanked him for his time. I didn't go in expecting anything really I had an open mind. Open minds are pretty easy for me with my memory loss lol.
Oh I told him that I thought my memory loss was a benefit to me, I said if I had a clear memory of every night I suffered with that amount of torture I wouldn't be alive to talk about it today. Plus I don't remember that I'm mad at my husband or kids for more then a few minutes.
Hmmm maybe I don't want to get my perfect memory back lol.
Sorry if I rambled but I wanted to report back to you all. Again sorry for my delay.
I love you all. Hang in there! I care about your sleepless nights!
And YES!!! we do need to think of something to say to those people that tell us we should just go to bed. ROFL
Sleep doctor, neurologist and Internist ROFLMAO! We need to write some jokes about them walking into a bar LOLOLOLOL!!!
Last edited by woodsie357 on Thu Feb 12, 2009 4:19 am, edited 1 time in total.
Someone cares about your sleepless nights
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woodsie357
- Posts: 147
- Joined: Wed Feb 04, 2009 7:54 am
wow sorry about the typos.
One other thing I remember him saying is that RLS sufferers seem to tolerate their sleeplessness better the other sleep disorders. As far as not looking sleep deprived. Take someone that's got sleep apnea they fall asleep standing up and snore between sentences. He said our RLS brains seem to be wired to stay awake. I agreed with him.
I've had a lot of Doctors tell me that I'm getting more sleep then I think I am. That you really fall asleep before you know your asleep. I'm thinking to myself I know I'm not sleeping because I'm not in bed. I'm walking around the house all night... Most doctors don't get that.
I've tried to explain it before as if someone is sitting across your chest and every time your just about to fall into sleep mode they slap you till you get out of bed. And how easy is it to sleep if your constantly being slapped around. And how easy would it be to stay awake all night if someone was slapping you silly for days at a time when ever you closed your eyes. I think that's the point where they think I'm crazy and give me antidepressants... and those really help (sarcasm on!!!)
One other thing I remember him saying is that RLS sufferers seem to tolerate their sleeplessness better the other sleep disorders. As far as not looking sleep deprived. Take someone that's got sleep apnea they fall asleep standing up and snore between sentences. He said our RLS brains seem to be wired to stay awake. I agreed with him.
I've had a lot of Doctors tell me that I'm getting more sleep then I think I am. That you really fall asleep before you know your asleep. I'm thinking to myself I know I'm not sleeping because I'm not in bed. I'm walking around the house all night... Most doctors don't get that.
I've tried to explain it before as if someone is sitting across your chest and every time your just about to fall into sleep mode they slap you till you get out of bed. And how easy is it to sleep if your constantly being slapped around. And how easy would it be to stay awake all night if someone was slapping you silly for days at a time when ever you closed your eyes. I think that's the point where they think I'm crazy and give me antidepressants... and those really help (sarcasm on!!!)
Someone cares about your sleepless nights
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woodsie357
- Posts: 147
- Joined: Wed Feb 04, 2009 7:54 am
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woodsie357
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- Joined: Wed Feb 04, 2009 7:54 am
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woodsie357
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ViewsAskew
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Woodsie, isn't that the best news?
You saw Dr Allen, right? He is one of my favorites in terms of how he presents at conferences. But, I've a few favorites, lol. He's sprightly and bright and his compassion comes through so strongly.
I remember the first conference I went to and he was talking. Lynne and I talked about this later - when he said that we seem to tolerate sleep deprivation better than other people. I seem to recall that they were potentially going to study that. I don't know if they did...
Can't wait to see your next post after you sleep. I hope the 2.5 works for you. And, hope he gave you some direction regarding what to do if this isn't the right dose.
Some days, life is good.
You saw Dr Allen, right? He is one of my favorites in terms of how he presents at conferences. But, I've a few favorites, lol. He's sprightly and bright and his compassion comes through so strongly.
I remember the first conference I went to and he was talking. Lynne and I talked about this later - when he said that we seem to tolerate sleep deprivation better than other people. I seem to recall that they were potentially going to study that. I don't know if they did...
Can't wait to see your next post after you sleep. I hope the 2.5 works for you. And, hope he gave you some direction regarding what to do if this isn't the right dose.
Some days, life is good.
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.
-
woodsie357
- Posts: 147
- Joined: Wed Feb 04, 2009 7:54 am
Actually it was Dr. Earley, I'll have to look up Dr. Allen. I don't remember if he said they studdied the sleep deprivation differences or not, but he did say they were about to publish 10 years worth of data very soon.
It's 1:36am and I'm awake and having leg sensations =(, but I am in a good mood, I've had no breathing difficulties that I can recognize.
Due to all of the warnings I've read on this website I've been very cautious about the other medications I have at hand, and I'm not taking them. Thank you very much for your posts in that regard.
I'm going to have to hop in the hot bathtub here pretty soon, but I don't mind.
It's 1:36am and I'm awake and having leg sensations =(, but I am in a good mood, I've had no breathing difficulties that I can recognize.
Due to all of the warnings I've read on this website I've been very cautious about the other medications I have at hand, and I'm not taking them. Thank you very much for your posts in that regard.
I'm going to have to hop in the hot bathtub here pretty soon, but I don't mind.
Someone cares about your sleepless nights