Re: RLS & PLMD question

[Guest guest]

Dear Pam,

Your question is one that I had thrown out to the group, but never got a

response to. I have tried all the " Parkinson " meds and couldn't tolerate them.

Mostly, they made my legs worse, to include the wonder drug Mirapex. It seems

as though some people are able to tolerate either one group or the other. My

question was, why ? I take 900mg Neurontin tid and Klonopin 0.5mg 1-3 tab prn.

I've tried to cut down on the Klonopin d/t the Baclofen and MS Contin-I felt

that I was/am taking too many meds, although I need them. I've tried taking an

extra Neurontin during the day when symptoms flare up, but it " drugs " me up

too much vs taking 0.5mg of the Klonopin.

I don't know why some one was saying that there are no side-affects

w/Neurontin. When I first tried it, I was working as a Dialysis Tech and had

the shakes so bad that I could'nt cannulate my pt's.-to include other side-

affects. When I tried it almost 1yr later, I was able to tolerate the side

affects much better, but I still had them. I also saw alot of my pt's who were

being tried on it at seemingly small doses ( 100mg qd ) for all different

reasons.

You also maybe experiencing augmentation w/the sinemet, where the Klonopin

is helping with that. You are also saying that it's raining in your neck of

the woods and a significant number of people state that the rain, or other

weather changes can exascerbate symptoms-unless you've noticed this before the

bad weather started. May be you could do a daily " RLS diary " to help

pinpoint/assess your symptoms. It's worth a shot and then you could arm

yourself when and if you need to talk w/your Doc.

I have no working knowledge of AA but I do know that RLS/PLMD is a day-to-

day thing. One of it's many frustrating features I don't know if I've

helped you or confused you- maybe Dr. Levin can answer this one !

Take care le 37 R.I.

[Guest guest]

Hi le,

I guess I've been one of those touting the no side effects aspect of

Neurontin. If I've learned anything from this list, it's how different

we all are, and how differently we respond to things. For me, I

experience no side effects from Neurontin, and I take as much as 1600

mg. at night before bed. It does not give me that drugged-out feeling

like benzos such as Klonopin or Xanax. It seems to (for the most part)

quell the creepy-crawlies in my legs so I can get to sleep. The neuro

touted it as being one of the more benign of the RLS drugs.

Yours is the first I've heard about getting the shakes from Neurontin.

I have asked the group if anyone has experienced any adverse reactions

or side effects from Neurontin and got no answer. Some have agreed that

Neurontin was the most benign thing they'd tried.

Goes to show how we are all " fearfully and wonderfully made... "

Jeff P. 45

Co. Spgs where winter's a-comin'

Manti11053@... wrote:

>

> From: Manti11053@...

>

> Dear Pam,

> Your question is one that I had thrown out to the group, but never got a

> response to. I have tried all the " Parkinson " meds and couldn't tolerate them.

> Mostly, they made my legs worse, to include the wonder drug Mirapex. It seems

> as though some people are able to tolerate either one group or the other. My

> question was, why ? I take 900mg Neurontin tid and Klonopin 0.5mg 1-3 tab prn.

> I've tried to cut down on the Klonopin d/t the Baclofen and MS Contin-I felt

> that I was/am taking too many meds, although I need them. I've tried taking an

> extra Neurontin during the day when symptoms flare up, but it " drugs " me up

> too much vs taking 0.5mg of the Klonopin.

> I don't know why some one was saying that there are no side-affects

> w/Neurontin. When I first tried it, I was working as a Dialysis Tech and had

> the shakes so bad that I could'nt cannulate my pt's.-to include other side-

> affects. When I tried it almost 1yr later, I was able to tolerate the side

> affects much better, but I still had them. I also saw alot of my pt's who were

> being tried on it at seemingly small doses ( 100mg qd ) for all different

> reasons.

> You also maybe experiencing augmentation w/the sinemet, where the Klonopin

> is helping with that. You are also saying that it's raining in your neck of

> the woods and a significant number of people state that the rain, or other

> weather changes can exascerbate symptoms-unless you've noticed this before the

> bad weather started. May be you could do a daily " RLS diary " to help

> pinpoint/assess your symptoms. It's worth a shot and then you could arm

> yourself when and if you need to talk w/your Doc.

> I have no working knowledge of AA but I do know that RLS/PLMD is a day-to-

> day thing. One of it's many frustrating features I don't know if I've

> helped you or confused you- maybe Dr. Levin can answer this one !

>

> Take care le 37 R.I.

>

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

>

[Guest guest]

Pam, I do take 10mgs of kolonopin a night to handle the RLS only &

I take sinemet also & that is for the PLMD to my understanding. Ray 40

Pgh PA

[Guest guest]

Pam,

From all the sharing of the different meds taken by us " rls's " we seem to fall

into two different catagories. Those who take the parkinsons drugs and the

others (like me) who only respond to the opiods. I have taken both, and

finally have hit on a combination of Klon, vicodin and percocet at night.

They are the only ones (for now, that is) that work for me. You would have to

kill to get my Klon away from me..By the way I just read an article about the

much overdiscussed k2y problem and the drug manufacturers. They sugested we

contact the manafacturer and make sure they are all set up for the turn of the

century, I guess some people are already starting to hoard Klon in

anticipation of some kind of screw up with thier systems.

Who's paranoid?????

Lee