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Re: RLS research

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Hi Bernard and All,

It's wonderful that you are so current with rls research, and willing

to share it with us. I take .50 mg of Mirapex a day, and have a

terrible time staying awake while driving home from work. I drive an

hour each way, and I'm fine in the morning, but the late afternoon is

murder. It is more than just feeling sleepy - it is an actual swimming

feeling, almost dizziness, and it scares the hell out of me, because I

know my reflexes must be awful, even if I don't actually fall asleep.

It wasn't always this bad, so I'm not sure if it's the Mirapex, or

what. I've doubled my caffein intake, which I know is not good, but

preferable to harming myself and others by going to sleep. This

intense sleepiness is usually followed by the rls kicking in, for which

I am actually grateful, because then I'm fully awake!

Thanks again for posting your findings.

ne, 59, Lawrenceville, NJ

--- Bernard Jenni Bjenni@...> wrote:

>

>

> Hi All,

>

> good news: it seems that research in RLS is growing,

> I just looked at the

> abstracts of the 51st Annual Meeting of the American

> Academy of Neurology

> (April 1999, Toronto) and found 7 contributions

> dealing with RLS.

>

> Hot spots:

>

> R.'s group (Baltimore) reported that RLS

> patients showed abnormally low

> CSF (cerebrospinal fluid) ferritin , despite having

> normal serum ferritin.

> It is then probable that RLS pathophysiology

> involves abnormal regulation of

> brain iron.

>

> C. Trenkwalder's group (Germany) investigated the

> involvement of opioidergic

> versus dopaminergic systems in RLS. These studies

> strongly reinforce an

> involvement of opioidergic mechanisms in RLS, as far

> as sensory symptoms and

> PLM are concerned.

>

> (IHMO, this is very important because todays

> thinking is oriented almost

> only towards the " dopaminergic way of treatment " and

> one-sided views are

> usually not very productive in the long term.)

>

> S. Frucht et al.(NY), called attention to a

> previously unreported side

> effect for Pramipexole (Mirapex) and Ropinirole

> (Requip): Falling asleep at

> the wheel! 8 Parkinson patients had an incidents

> which resulted in car

> accidents, but none of the patients was injured.

> All the patients described

> a " sudden, irresistible and overwhelming sleepiness

> without being aware of

> falling asleep " . The average dose of pramipexole was

> 2,9 mg/day, and

> Ropinirole 16 mg/day. No further sleep attacks

> occurred after reducing the

> doses.

>

> The med. producers commented that somnolence is

> often seen in Parkinson's

> patients, even those not on drug therapy. No similar

> cases of patients

> falling asleep abruptly while driving have been

> reported during clinical

> trials or in the 2 years that pramipexole has been

> marketed- it was

> prescribed to more than 118,000 patients in the US

> alone in 1998. (Scrip No

> 2433, April 30th 1999,p.21)

>

> Did any of the Cyber-RLS-sufferers out there

> experienced such side effect ?

>

> Have a good day (and night)

> Bernard, Switzerland

>

>

>

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> and is not intended to replace the examination,

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> physician and no such claims are inferred.

>

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Dear Bernard,

Thank you for sharing that information with us. I have never experienced an

irresistable impulse to fall asleep, especially while driving. I hope this

never happens. I'm on a very low dose of Mirapex. To the group, thank you

for your thoughts and prayers during my biopsy. Results are next Tuesday. I

told my Dr., " I don't have time for breast cancer! " . He laughed. I hope all

is well. It is glorius in Malibu today. No dolphins, but lots of Pelicans

diving for food. Connie, come out for some roasted pepper and goat cheese

sandwiches! Welcome to all the Newcomers. Elaine, Malibu

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>

>

> Did any of the Cyber-RLS-sufferers out there experienced such side effect ?

>

Yes, only I was sitting at my computer at work and felt sudden sleepiness--on

two different

days--in the afternoon. I came home and slept on and off the rest of the day.

Strange. I'm

only taking .5 to 1 mg a day and occasionally will add another .5.

Lindy B. in Southeast Texas

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>

>murder. It is more than just feeling sleepy - it is an actual swimming

>feeling, almost dizziness, and it scares the hell out of me, because I

>know my reflexes must be awful, even if I don't actually fall asleep.

Gosh, I'm having this problem with Mirapex, too. Sudden dizziness and just

feeling " off " , then intense sleepiness. Also, I'm so hungry all the time I

could practically eat this keyboard! Anyone else notice a huge increase in

appetite?? I've been taking this about 4 weeks, BTW.

, 35, Atlanta

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>

>murder. It is more than just feeling sleepy - it is an actual swimming

>feeling, almost dizziness, and it scares the hell out of me, because I

>know my reflexes must be awful, even if I don't actually fall asleep.

Gosh, I'm having this problem with Mirapex, too. Sudden dizziness and just

feeling " off " , then intense sleepiness. Also, I'm so hungry all the time I

could practically eat this keyboard! Anyone else notice a huge increase in

appetite?? I've been taking this about 4 weeks, BTW.

, 35, Atlanta

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I had trouble with weight gain with Zoloft , Permax and Depakote.

from now on that's the first thing I ask. As bad as My RLS is I would

NEVER take anything else that causes weight gain. At 51 and 12 years

past menopause, I don't need any help with weight gain. I have never

taken Mirapex, but I believe Requip is

pretty much the same thing. I took it for over a year. After a month of

weaning, I am now off completely and will never take anything like that

again. It did cause excessive sleepiness with the first dose of the

day.Yes, it worked, but you better not miss a dose or take it late or

you're in real trouble. I know I'm controlled by my RLS , but I never

want to be that controlled by a med again. I feel almost positive it was

giving me vision problems and joint pain. Both are better now. I am

still having some gastro problems and am very anemic . This may or may

not be related, but I am just looking for something now to quiet my

limbs and still allow me to wake up in the morning. I am thankful that

at least i can make it through the daytime without " jerking " (for now at

least) .Off on the grand search again.

Ninette

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I had trouble with weight gain with Zoloft , Permax and Depakote.

from now on that's the first thing I ask. As bad as My RLS is I would

NEVER take anything else that causes weight gain. At 51 and 12 years

past menopause, I don't need any help with weight gain. I have never

taken Mirapex, but I believe Requip is

pretty much the same thing. I took it for over a year. After a month of

weaning, I am now off completely and will never take anything like that

again. It did cause excessive sleepiness with the first dose of the

day.Yes, it worked, but you better not miss a dose or take it late or

you're in real trouble. I know I'm controlled by my RLS , but I never

want to be that controlled by a med again. I feel almost positive it was

giving me vision problems and joint pain. Both are better now. I am

still having some gastro problems and am very anemic . This may or may

not be related, but I am just looking for something now to quiet my

limbs and still allow me to wake up in the morning. I am thankful that

at least i can make it through the daytime without " jerking " (for now at

least) .Off on the grand search again.

Ninette

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Same here about the sleepiness during the day. The insommnia at night is

sometimes bad and then

the daytime sleepiness-- well, I'm going to have to see if my daytime sleepiness

is related to a

sleepless night. (I'm trying not to take the Klonopin)

And, yes, the front door looks like a strawberry shortcake when I get home from

school every day

and I could eat the entire thing. I have gained about 10 lbs since starting

Mirapex about six

months ago.

Lindy B. in Southeast Texas

L Kay wrote:

>

>

> >

> >murder. It is more than just feeling sleepy - it is an actual swimming

> >feeling, almost dizziness, and it scares the hell out of me, because I

> >know my reflexes must be awful, even if I don't actually fall asleep.

>

> Gosh, I'm having this problem with Mirapex, too. Sudden dizziness and just

> feeling " off " , then intense sleepiness. Also, I'm so hungry all the time I

> could practically eat this keyboard! Anyone else notice a huge increase in

> appetite?? I've been taking this about 4 weeks, BTW.

>

> , 35, Atlanta

>

>

>

> ------------------------------------------------------------------------

> With more than 14 million emails exchanged daily...

> http://www.onelist.com

> ...ONElist IS the place where the world talks!

> ------------------------------------------------------------------------

> This forum is for support only. The information posted to this List is for

support purposes

> and is not intended to replace the examination, diagnosis and treatment of a

licensed

> physician and no such claims are inferred.

--

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Same here about the sleepiness during the day. The insommnia at night is

sometimes bad and then

the daytime sleepiness-- well, I'm going to have to see if my daytime sleepiness

is related to a

sleepless night. (I'm trying not to take the Klonopin)

And, yes, the front door looks like a strawberry shortcake when I get home from

school every day

and I could eat the entire thing. I have gained about 10 lbs since starting

Mirapex about six

months ago.

Lindy B. in Southeast Texas

L Kay wrote:

>

>

> >

> >murder. It is more than just feeling sleepy - it is an actual swimming

> >feeling, almost dizziness, and it scares the hell out of me, because I

> >know my reflexes must be awful, even if I don't actually fall asleep.

>

> Gosh, I'm having this problem with Mirapex, too. Sudden dizziness and just

> feeling " off " , then intense sleepiness. Also, I'm so hungry all the time I

> could practically eat this keyboard! Anyone else notice a huge increase in

> appetite?? I've been taking this about 4 weeks, BTW.

>

> , 35, Atlanta

>

>

>

> ------------------------------------------------------------------------

> With more than 14 million emails exchanged daily...

> http://www.onelist.com

> ...ONElist IS the place where the world talks!

> ------------------------------------------------------------------------

> This forum is for support only. The information posted to this List is for

support purposes

> and is not intended to replace the examination, diagnosis and treatment of a

licensed

> physician and no such claims are inferred.

--

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Guest guest

Same here about the sleepiness during the day. The insommnia at night is

sometimes bad and then

the daytime sleepiness-- well, I'm going to have to see if my daytime sleepiness

is related to a

sleepless night. (I'm trying not to take the Klonopin)

And, yes, the front door looks like a strawberry shortcake when I get home from

school every day

and I could eat the entire thing. I have gained about 10 lbs since starting

Mirapex about six

months ago.

Lindy B. in Southeast Texas

L Kay wrote:

>

>

> >

> >murder. It is more than just feeling sleepy - it is an actual swimming

> >feeling, almost dizziness, and it scares the hell out of me, because I

> >know my reflexes must be awful, even if I don't actually fall asleep.

>

> Gosh, I'm having this problem with Mirapex, too. Sudden dizziness and just

> feeling " off " , then intense sleepiness. Also, I'm so hungry all the time I

> could practically eat this keyboard! Anyone else notice a huge increase in

> appetite?? I've been taking this about 4 weeks, BTW.

>

> , 35, Atlanta

>

>

>

> ------------------------------------------------------------------------

> With more than 14 million emails exchanged daily...

> http://www.onelist.com

> ...ONElist IS the place where the world talks!

> ------------------------------------------------------------------------

> This forum is for support only. The information posted to this List is for

support purposes

> and is not intended to replace the examination, diagnosis and treatment of a

licensed

> physician and no such claims are inferred.

--

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