Re: RLS: success story request

[Guest guest]

In a message dated 10/28/98 9:58:02 PM Central Standard Time,

dudleyp@... writes:

<<

I think Jill's suggestion that details be included with all claims for

treatments is an excellent one. There was a time when I thought

Sinemet was GREAT. Then after a few months, the rebound and

augmentation started. My neurologist told me to take more and even to

take it during the day when I started having daytime RLS. Well, I >>

, I too take Sinemet. Twice I have taken drug holidays from it, and then

I can go back to it as though I am starting all over again at the first low

dosage. In fact, this is the 3rd day of my drug holiday, out of five, that I

am doing right now. I learned this from the Nights newsletter. And,

never to take more than 300mg of it per 24 hours. Dr. Levin told me to stay

on it as long as possible, and with the help of the suggestion from the

newsletter, I hope to do just that. One thing I have learned is to never

take one during the day unless riding in a car, or plane, or bus, and then

only count that toward your nitely dose. Never more than the 300 mg. in 24

hrs.

Doreen 63, Birmingham

[Guest guest]

To Jill and the group:

I think Jill's suggestion that details be included with all claims for

treatments is an excellent one. There was a time when I thought

Sinemet was GREAT. Then after a few months, the rebound and

augmentation started. My neurologist told me to take more and even to

take it during the day when I started having daytime RLS. Well, I

won't bore you with the details but the results weren't pleasant.

Then it was on to Permax. That too gave me several months of

peace--the nausea seemed a small price to pay for calm legs and the

ability to get some sleep. Then I started becoming tolerant and my

stomach couldn't handle an increase in dosage. I've been on Mirapex

since June and so far it has been controlling the RLS just as well as

it did at first. Any attmepts to cut back have resulted in RLS

return, but so far things are going well with it. How long will this

last? Who knows.

Jodi-- Perhaps a page where members can post details of their

treatment histories would be useful. I know it would increase your

workload, but I think it would be more useful than photos and

birthdates. The date of submission sould be included, and members

should be encouraged to update their information. This would provide

a good reference to the treatments and success. Perhaps separate

pages for pharmaceutical and alternate treatments would be helpful

too. Just a thought.

--, 52, Western NY State.

---Jill Gunzel gunzel@...> wrote:

>

>

>

> I have a request...suggestion..whatever. It might help if when we

talk

> about a medicine or treatment really working " miracles " for us, that

we

> specify how long we've been using it with such great results. I

thought of

> this while reading the recent praises of Mirapex. It doesn't matter

WHAT

> we are praising...it could have been my tea or suckers or music,

too. The

> point is, we hear something is working great and then we find out

it's only

> been working great for a couple of weeks, before problems arise. I

know we

> can't always remember to include every petty detail, but it's just a

> thought to keep in mind.

>

> So, what I'm really doing is asking Solveig, , and ne,

" How long

> have you been on Mirapex and having these results? " Maybe someone

else,

> who stopped having good results, can talk to you and figure out why

it's

> working longer or better for you, than for them.

>

> My suggestion has nothing to do with the drugs vs alternatives

debate. And

> it is NOT to say Mirapex can't keep working. I have to remind

myself, too,

> when I speak of something like the DHA that I'm working with, to

carefully

> CLARIFY what kinds of results I'm having. After a week, I found

myself

> telling someone, " My RLS is GONE! " Well, before they could get to the

> store to buy it, you guessed it...I had an RLS attack. I made a

note to

> myself, to clarify, by saying, " I've been using X amount for X

weeks, and

> I've had fewer and easier to manage RLS attacks. "

>

> I KNOW...I'm being nit picky. But I just thought it's a good thing

to keep

> in mind, even if we don't always remember it.

> So, MY contribution is this: I'm going on about five months, now, of

> swearing by my tea and suckers. *smirk* Trying to be funny,

guys....LAUGH!

>

> Jill, 46

> Payson, AZ

> http://www.netzone.com/~gunzel/rls.html

>

>

------------------------------------------------------------------------

>

[Guest guest]

Last night was the first night back on Sinemet. And, I could keep it on the

50/200 dose, without waking up about 6:00AM, feeling like I had to take

another. I took a 25/100 at about 9pm. Then at ll:00pm when we went to bed,

I took my 25/100 CR. And, usually that would give out around 6:00a.m. But, I

slept until 9:30, with no problems. Yay!!!!!!! So, will let you know how

today goes with the legs.

Doreen, 63, Birmingham