Dear nice RSL Peeps!
I was put on Requip in 2000 but that was when I started with ME-CFS (most of you my know this by Chronic Fatigue Syndrome)and the myalgias in my legs were so bad!....then in the fall of 2005 I started with Narcolepsy and in the summer of 07 (August) I went off the Requip because I was so sleepy I was forgetting to take it! Now I'm waking up early in the AM, starting with twitches that wind up with me looking like I've got Parkinsons disease or something? My entire body jerks so baad but I never stop breathing or lose consciousness? So tell me this? My Dr. put me on Aderall to help keep me stay awake (the narcolepsy) which boosts dopamine (sp?sorry) and something else in the brain.....doesn't RLS come from extra dopamine in the nervous system? Would Aderall indeed make this condition suddenly reappear? It was the worst it's been this morning at 12:45 am and my hubby got me up and started walking me around the house, got me some milk and then by the time we got back upstairs it all stopped. This is the 5th time and I was very upset for the last two days about something and I read somewhere that getting upset can make RLS worse? (not cause it but trigger the condition to make it worse?)
Thanks so very much--Sleepingyawnette
PS: My legs also start buzzing around noon and get worse throughout the day and sometimes itch so bad I think I may go nuts!
Ok, RLS + stuff? LOL! Questions
-
sleepingyawnette
- Posts: 2
- Joined: Thu Feb 28, 2008 1:34 pm
- Location: Va
- Contact:
Hi S and welcome to the rls family. Sorry you are having such a difficult time. One of the theories about the cause of rls is that it may be due to a "lack" of dopamine in the brain rather than an overabundance of dopamine. "Several RLS medications including Parlodel, Permax, Mirapex, Requip, and Symmeprel are dopamine agonists which simply means they bind to dopamine receptors, producing dopamine-like effects."
Adderall, according to Dr. Buchfuhrer, is one of many stimulant medications that has been noted to increase rls/plmd symptoms. So it's possible some of your worsening symptoms may be due to how you react to this medication. Not sure your "body jerks" are in the realm of Periodic Leg Movement Disorder or not. Perhaps something you could check with your doctor about. I suspect you have had a sleep study if you have been diagnosed with Narcolepsy. But a sleep study can determine if you are experiencing PLMD. PLMD can also occur while awake.
Stress can also make rls worse for many. But, it's kinda like the snowball rolling down hill and/or what came first the chicken or the egg. That is, rls causes stress/anxiety which worsens the rls which triggers stress/anxiety.
Don't know how much reading you have done but the sticky "Managing Your RLS" may give you more information or answer more questions.'' In that section you will also find information about meds which typically, but not in all, make rls worse. Ditto with some non med items such as alcohol, caffeine, etc.
Also, I do not have personal experience with ME-CFS, Narcolepsy, or Adderall. Others here have and I'm sure you will hear from them. You may also want to post in the Special Populations Forum.
Are you being treated for all your conditions by the same provider. Does your provider have experience with RLS as well as the others. If not, you may want to seek out someone familiar with rls and hopefully all your providers will consult with each other.
Once again, sorry for all you are going through but glad you have found your way here. Best wishes.
M.
Adderall, according to Dr. Buchfuhrer, is one of many stimulant medications that has been noted to increase rls/plmd symptoms. So it's possible some of your worsening symptoms may be due to how you react to this medication. Not sure your "body jerks" are in the realm of Periodic Leg Movement Disorder or not. Perhaps something you could check with your doctor about. I suspect you have had a sleep study if you have been diagnosed with Narcolepsy. But a sleep study can determine if you are experiencing PLMD. PLMD can also occur while awake.
Stress can also make rls worse for many. But, it's kinda like the snowball rolling down hill and/or what came first the chicken or the egg. That is, rls causes stress/anxiety which worsens the rls which triggers stress/anxiety.
Don't know how much reading you have done but the sticky "Managing Your RLS" may give you more information or answer more questions.'' In that section you will also find information about meds which typically, but not in all, make rls worse. Ditto with some non med items such as alcohol, caffeine, etc.
Also, I do not have personal experience with ME-CFS, Narcolepsy, or Adderall. Others here have and I'm sure you will hear from them. You may also want to post in the Special Populations Forum.
Are you being treated for all your conditions by the same provider. Does your provider have experience with RLS as well as the others. If not, you may want to seek out someone familiar with rls and hopefully all your providers will consult with each other.
Once again, sorry for all you are going through but glad you have found your way here. Best wishes.
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
-
sleepingyawnette
- Posts: 2
- Joined: Thu Feb 28, 2008 1:34 pm
- Location: Va
- Contact:
Thank You!
That was fast! Sleep study...hmmmm, what I have heard is in order to do one I would have to come off my meds (all of them) and I just can't do that (anti-depressants etc.). My MD who is a great Dr. has been trying for 3 years to find the right med for the Narcolepsy, I am also in a forum for it!!! Actually the ME-CFS also! LOL! I was on Provigil which is the best in the business for many Narcoleptics, however NOT ME! It almost put me in the grave! I've also tried dextrostat, and neither have worked as well as Aderall and they all have side-effects, some of which as you are probably already educated about...some of which in order to survive you have to put up with the side effects. (double edged sword). I've heard of a drug called Xrem (I think that is how you spell it) for Narcolepsy but it is a very scarey and powerful drug and I don't know if it is a stimulant like the rest or not! I am very sensitive to drug side effects and interactions. My pharmacist had me go down on the Aderall several weeks ago when these "something something's" started to occur because I'm on Anafranil and only 25 mgs of it and apparently Aderall reacts to it. Also, I can't take certain antibiotics with the Anafranil but it controls my intrusive thinking (no I'm not a psychopath, LOL)...and I can't live without it and I know that without a hesitation. I just had my liver and kidney function tested and also heavy metal testing and everything was normal, negative, awesome! 
After 3 years of this and not being able to drive again for over a year, I'm very depressed and I haven't been in so long I just can't believe it has returned. Plus, my hubby doesn't support me and that doesn't mean he's a bad hubby, he is just who he is. I go back to the Dr. in two weeks, so we'll see what happens then unless I wind up going to the hospital which I don't think I will.
Thanks so very much for your fast post!!! If you have anything extra to add just post again! LOL...
Sleepingyawnette
After 3 years of this and not being able to drive again for over a year, I'm very depressed and I haven't been in so long I just can't believe it has returned. Plus, my hubby doesn't support me and that doesn't mean he's a bad hubby, he is just who he is. I go back to the Dr. in two weeks, so we'll see what happens then unless I wind up going to the hospital which I don't think I will.
Thanks so very much for your fast post!!! If you have anything extra to add just post again! LOL...
Sleepingyawnette
-
SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Hi Sleepingyawnette, and welcome to the forum. I participate in another message forum for people with chronic illnesses, and I've heard at least one wonderful report of Xyrem. There is a gal with narcolepsy who has had great success with it. Apparently it makes people sleep very, very soundly, so that people are rested when they wake up and need less stimulants. It is one of the common treatments for narcolepsy, but it is very strong and very tightly controlled.
I hope you get some answers and some relief.
I hope you get some answers and some relief.
Last edited by SquirmingSusan on Tue Mar 04, 2008 2:17 am, edited 1 time in total.
Susan
S, Willie Ollie Willie (WOW). Your history is, for me, very complicated. It certainly sounds like you have and are going through an awful lot. You are a very strong person. Sounds like you have confidence in you doc and also seems that he has been working for and with you. That's certainly a plus. We should all be so lucky. Like Susan, I have heard and read some good things about Xyrem. Like you, as with any meds, I have also heard and read of the downsides. It certainly is a slippery slope isn't it. I believe we have had several threads about Xyrem. So, if you do a search, you may find a little more "opinion" about it.
About the sleep study and certainly not pushing it, but while I think a "no med" study might be preferred I don't think that it is necessarily a requirement. I, for one, had one while taking medication for rls. So, it can be done. I suspect it could also be done to determine the effectiveness of a medication. Anyway, it might be different for some conditions vs others. I also guess that if the diagnoses is clear without one than a sleep study may simply not be necessary.
Support is so important to all of us and I know being part of this Board has been very comforting--an understatement, I'm sure. Hopefully, you will find support in other areas of you life closer to home. But, remember, we are close also so feel free to drop in anytime. Also, please keep us informed as to how you are doing as this is how we all learn. Best wishes, my friend.
M.
M.
About the sleep study and certainly not pushing it, but while I think a "no med" study might be preferred I don't think that it is necessarily a requirement. I, for one, had one while taking medication for rls. So, it can be done. I suspect it could also be done to determine the effectiveness of a medication. Anyway, it might be different for some conditions vs others. I also guess that if the diagnoses is clear without one than a sleep study may simply not be necessary.
Support is so important to all of us and I know being part of this Board has been very comforting--an understatement, I'm sure. Hopefully, you will find support in other areas of you life closer to home. But, remember, we are close also so feel free to drop in anytime. Also, please keep us informed as to how you are doing as this is how we all learn. Best wishes, my friend.
M.
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
-
cmoore1958
- Posts: 232
- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
He Sleeping,
I've read this string of posts and am curious about how your narcolepsy was diasnosed. Here's why . . .
I've been taking mirapex for about 2 years now and have been augmenting or a couple of months on it (didn't know that's what it was until very recently). Basically I haven't had more than 2-4 hours sleep a night in that long or longer. My legs are 24/7 active now, but even as they built up to this over the past months, my sleep was getting less and less. I have plmd as well as rls so the movement of my legs keeps me from getting into sleep too deep and the rls causes me to wake up, take notice and walk.
As I've gotten more tired I have started to fall asleep very abruptly with no warning. I spend some mornings totally groggy and keep dozing off at my computer. I've even fallen asleep while standing up on my balcony last weekend, and thank God woke up during the all so I could catch myself. Very scarey! When I talked to my doc he said that I have severe sleep deprivation which causes these symptoms which mimmick narcolepsy. The distinction is that without my rls and side effects of late, I would not have the sleep problem.
This does not make it less serious by any means. I'm terrified that when I drive I will fall asleep. I can't contribute at work on a competent level right now and that's not good either.
Saying all of this, I guess I just wanted to know more about how you were diagnosed and what led to this diagnosis since I have a lot of the symptoms as well. See . . . by coming to this board you just may be already helping someone -- me!
Or, possibly, my doc was right about my falling asleep issues and you don't need all that additional medication afterall? Only a competent doctor can tell us thos answers and I'm currently searching for a competent rls doctor who's not afraid to treat augmentation in the correct manner.
I look forward to hearing from you soon. Take care. And, if you have time, we meet in the chat room at 8 pm CST tonight to chat. We'd love to have you join us.
Hugs
Cyndi
I've read this string of posts and am curious about how your narcolepsy was diasnosed. Here's why . . .
I've been taking mirapex for about 2 years now and have been augmenting or a couple of months on it (didn't know that's what it was until very recently). Basically I haven't had more than 2-4 hours sleep a night in that long or longer. My legs are 24/7 active now, but even as they built up to this over the past months, my sleep was getting less and less. I have plmd as well as rls so the movement of my legs keeps me from getting into sleep too deep and the rls causes me to wake up, take notice and walk.
As I've gotten more tired I have started to fall asleep very abruptly with no warning. I spend some mornings totally groggy and keep dozing off at my computer. I've even fallen asleep while standing up on my balcony last weekend, and thank God woke up during the all so I could catch myself. Very scarey! When I talked to my doc he said that I have severe sleep deprivation which causes these symptoms which mimmick narcolepsy. The distinction is that without my rls and side effects of late, I would not have the sleep problem.
This does not make it less serious by any means. I'm terrified that when I drive I will fall asleep. I can't contribute at work on a competent level right now and that's not good either.
Saying all of this, I guess I just wanted to know more about how you were diagnosed and what led to this diagnosis since I have a lot of the symptoms as well. See . . . by coming to this board you just may be already helping someone -- me!
Or, possibly, my doc was right about my falling asleep issues and you don't need all that additional medication afterall? Only a competent doctor can tell us thos answers and I'm currently searching for a competent rls doctor who's not afraid to treat augmentation in the correct manner.
I look forward to hearing from you soon. Take care. And, if you have time, we meet in the chat room at 8 pm CST tonight to chat. We'd love to have you join us.
Hugs
Cyndi
Even when we are by ourselves, we are never truly alone.
My motto: It's MY pitty-party and I'll vent if I want to.
My motto: It's MY pitty-party and I'll vent if I want to.
Hi Sleepingyanette.
As I was reading theu the stickies, I stopped here and read yours.
I too wonder if you have nar. or if it's the combo of meds. I can fall asleep when at the computer, and I have to really keep moving when in church, or off I go.
This would make me happy, but not good to sleep in church and it gets me that when I TRY to go to sleepl I can't. Love rls/plmd.
As I have said before in my posts, the thing that gets me the most is the fact that rls/plmd is so INDIVIDUAL. We all have it, but it isn't quite the same for any of us.
And when when we have uneducated Dr's, it is even worse.
The fact that you have a good Dr. is half of the battle.
Talk to him and go over the meds and be sure to read the side efects, which I am sure you do. lol ( That was the grandma in me ).
Welcome to the board, and please con. to post. As Cyndi said, you helped her, and that is what we are here for. And one last thing, please feel free to join us in the chatroom. We are usually there every night about 8 PM central time.
Love and Prayers,
Lorabell
aka
wowobl
As I was reading theu the stickies, I stopped here and read yours.
I too wonder if you have nar. or if it's the combo of meds. I can fall asleep when at the computer, and I have to really keep moving when in church, or off I go.
This would make me happy, but not good to sleep in church and it gets me that when I TRY to go to sleepl I can't. Love rls/plmd.
As I have said before in my posts, the thing that gets me the most is the fact that rls/plmd is so INDIVIDUAL. We all have it, but it isn't quite the same for any of us.
And when when we have uneducated Dr's, it is even worse.
The fact that you have a good Dr. is half of the battle.
Talk to him and go over the meds and be sure to read the side efects, which I am sure you do. lol ( That was the grandma in me ).
Welcome to the board, and please con. to post. As Cyndi said, you helped her, and that is what we are here for. And one last thing, please feel free to join us in the chatroom. We are usually there every night about 8 PM central time.
Love and Prayers,
Lorabell
aka
wowobl
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL