Re: medications

[Guest guest]

In a message dated 12/17/98 4:27:09 PM Central Standard Time,

LHarri9073@... writes:

<<

I have begun to wonder about my RLS. I am taking Sinemet 25/100 at night

about 7 p.m. My legs start to bother me about 8 or 9 p.m. for an hour or so.

Does everybody have this even taking medication? I tried to take it before

RLS hits but I do not succeed. I have some pain but when it first started >>

I too, take Sinemet, and sometimes it does that with me. And, then it

subsides in about 30 minutes, to 1 hour. I follow it up with a 50/200 CR, and

I sleep through the night with those two.

Good luck

Doreen, 63, Birmingham

[Guest guest]

hi Lila and all,

my hubby is taking sinemet 25/100 at bedtime to help with his movement..(pd)

and neurontin 400mg for rls. if he gets rls during the evening when he is

sitting still..like you...then he takes a neurontin and it helps in about 20

minutes or so..I am not sure about sinemet helping with rls..suppose so??

Coleen :-)

Reunited adoptee

phone/fax

Missing Links

support group Grants Pass, Or.

fredmom@... or fredmom@...

http://www.barysoftware.com

&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%

Oregon Adoptee Rights Initiative Measure 58

Our Birth Certificate: Our Right

http://www.plumsite.com/oregon/

Medications

>From: LHarri9073@...

>

>Dr. Levin,

>

>I have begun to wonder about my RLS. I am taking Sinemet 25/100 at night

>about 7 p.m. My legs start to bother me about 8 or 9 p.m. for an hour or

so.

>Does everybody have this even taking medication? I tried to take it before

>RLS hits but I do not succeed. I have some pain but when it first started

>years ago, I described it as my legs would not relax. I had it

occasionally

>when trying to sleep but it is every night now when I am sitting still. It

>seems to help to lay down. As I said, this seems weird to me and not the

way

>I understand it described by others. Should I try to change medications or

is

>this normal?

>

>Lila, in Tennessee, snow flurries today.

>

>LHarri9073@...

>

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

>

[Guest guest]

hi Lila and all,

my hubby is taking sinemet 25/100 at bedtime to help with his movement..(pd)

and neurontin 400mg for rls. if he gets rls during the evening when he is

sitting still..like you...then he takes a neurontin and it helps in about 20

minutes or so..I am not sure about sinemet helping with rls..suppose so??

Coleen :-)

Reunited adoptee

phone/fax

Missing Links

support group Grants Pass, Or.

fredmom@... or fredmom@...

http://www.barysoftware.com

&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%

Oregon Adoptee Rights Initiative Measure 58

Our Birth Certificate: Our Right

http://www.plumsite.com/oregon/

Medications

>From: LHarri9073@...

>

>Dr. Levin,

>

>I have begun to wonder about my RLS. I am taking Sinemet 25/100 at night

>about 7 p.m. My legs start to bother me about 8 or 9 p.m. for an hour or

so.

>Does everybody have this even taking medication? I tried to take it before

>RLS hits but I do not succeed. I have some pain but when it first started

>years ago, I described it as my legs would not relax. I had it

occasionally

>when trying to sleep but it is every night now when I am sitting still. It

>seems to help to lay down. As I said, this seems weird to me and not the

way

>I understand it described by others. Should I try to change medications or

is

>this normal?

>

>Lila, in Tennessee, snow flurries today.

>

>LHarri9073@...

>

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

>

[Guest guest]

Hi,

I have taken Sinemet 25/100 for many years because of PLMD, at least I thought

it

was for that and not RLS. I have always shaken my legs when I sit still but

never

realized why until the pain in them got so bad. I kept track of when I took

Sinemet and noticed that it does not help my RLS. I, too, can take it at 7pm

and

begin suffering with RLS within the next hour--for2-3 hrs. until I lay down and

stretch out to sleep. Lying down seems to help somewhat, when I'm extra sleepy

and ready to fall over.

I went off Sinemet 6-7 months ago, tried Mirapex, NO help, made me feel sick.

So

now when my legs feel unbearable, I take a Sinemet at night, no instant relief

but

my legs seem to feel better the next morning. I'll take one for a couple of

nights and then quit until the pain gets unbearable again...starts coming on

during the day and working on up my legs to my hips, then I'll do my 2-3 day

routine again. This seems to be the only way Sinemet helps, and NOT on a daily

basis. If I take it daily, pretty soon I'm into rebound and begin suffering all

day long with no help at all from Sinemet.

Weird, huh!?

Now, I just try to treat the pain when it gets excrutiating, but my worst

problem

is with continual daytime sleepiness which has never helped with the RLS meds

I've

tried.

Dr. Leven, anyone, can you comment?

Star

[Guest guest]

Hi,

I have taken Sinemet 25/100 for many years because of PLMD, at least I thought

it

was for that and not RLS. I have always shaken my legs when I sit still but

never

realized why until the pain in them got so bad. I kept track of when I took

Sinemet and noticed that it does not help my RLS. I, too, can take it at 7pm

and

begin suffering with RLS within the next hour--for2-3 hrs. until I lay down and

stretch out to sleep. Lying down seems to help somewhat, when I'm extra sleepy

and ready to fall over.

I went off Sinemet 6-7 months ago, tried Mirapex, NO help, made me feel sick.

So

now when my legs feel unbearable, I take a Sinemet at night, no instant relief

but

my legs seem to feel better the next morning. I'll take one for a couple of

nights and then quit until the pain gets unbearable again...starts coming on

during the day and working on up my legs to my hips, then I'll do my 2-3 day

routine again. This seems to be the only way Sinemet helps, and NOT on a daily

basis. If I take it daily, pretty soon I'm into rebound and begin suffering all

day long with no help at all from Sinemet.

Weird, huh!?

Now, I just try to treat the pain when it gets excrutiating, but my worst

problem

is with continual daytime sleepiness which has never helped with the RLS meds

I've

tried.

Dr. Leven, anyone, can you comment?

Star

[Guest guest]

Hi Peggie, I am in complete agreement with you here. I have a total of 3

doctors that I consider " good guys " . They represent 3 specialities and

where my overall health/wellness is concerned, the 4 of us work

TOGETHER! This has been ongoing for about 10 years. The other doctors of

my life well, you know, the word " jerks " doesn't do them justice.And the

doctors involved in the research I was in were even worse. But I don't

mean to doctor-bash here. I do feel it is important that one finds

doctors one can work with AS A TEAM. Doctors should never be given

" carte blanche " with our bodies to do their thing! One of my doctors

told me last summer he likes me alot because I teach him things!!!

And I am not done with his " education " yet! (maybe I should send him an

invoice?) I too have cut back on meds to see what the least dose is for

me to get optimum results. Alot of Drs. just look in the PDR and

prescribe the " adult " dose. My experience is that due to CMT and the

pheriphial nerves condition, the higher the dose, the worse I am. We can

teach our doctors alot - if they are open to that.

Gretchen

Peggie S. Weston wrote:

>

>

>

> Hi . Peggie here. I beg to disagree with you, but the doctors DO NOT

> ALWAYS KNOW BEST!!!! If I had done what the doctor told me to do with

> elavil - I would be dead now. I was the one that had to cut my own dosage

> down, because she wouldn't - and started me on 50mg (this was the MDA Neuro)

> (with her own private practice) and wanted me up to 150 mg withing 3 months.

> I have had two different doctors give me toxic medication that parallezed me

> twice - and they knew I had CMT. I had another doctor do my " ankle fusion "

> incorrectly and after 4 months of pain got to have it done again (by a

> different doctor!). Like many of us - I have been to MANY doctors, and

> could count on one hand any of them I would trust for anything....... Yes,

> we must be aware and check our own medications - however, WHO CHECKS ON THE

> DOCTORS? I think you are very wrong to say to have you doctor decide your

> dosage. We know much better then they do!!! Have a good day

> Re: memory notes

>

> > From: harmac1@...

> >

> > , here - I've been noticing the questions regarding memory loss. I

> > am one who believes CMT does not cause memory loss or confusion, but let

> > me add a few thoughts to this. Many of us with CMT take a variety of

> > perscribed medications. One many of us take is amitriptyline and drugs

> > in that group. That is a great drug that contributes to memory loss and

> > etc. Also the higher the dosage of that drug, the more likely is it's

> > interference with memory. To avoid that problem, I take it at bed time.

> > Remember : Every person reacts to any drug differently. With

> > amitripyline, some become forgetful (me ) while or whoever next

> > door may not One more comment on the amitriptyline is can also be a

> > help for those who can't sleep. It's an antidepressent with many uses,

> > Last comment, amitriptyline is a drug that must be used with caution.

> > It's NOT one that you by yourself can " play " with to find the best

> > dosage. Only your doctor can do this. It's a very potent drug.

> > Actually, my last sentence is

> > true of any drug. My memory is OK when I take it at bedtime and

> > weighing the " good " against the " bad " in regard to amitriptyline, it is

> > my choice to take it. The choices are always our own.

> > Now, more about memory loss. Another warning that involves

> > amitriptyline or groups of drugs of it's type is that often other meds

> > are used in conjunction with such drugs, drugs such as valium or xanax

> > or other types of that group.

> > These dugs mixed together will intensify the affects. The doctor

> > generally knows this and usually thats OK. Often after a week or two

> > that can become less. If you're not a doctor or pharmacist, always

> > check first with the doctor, ALWAYS make sure your doctor knows EVERY

> > drug you take because many of us with CMT have several doctors. Then

> > double check with your pharmacist. Mistakes are made by every human

> > being. That's why I check, double check and read what I can, because in

> > the end, I'd be the one to suffer, if a mistake were made.

> > Lastly, memory disturbances are often a side effect of depression.

> > A bad or sad day is not depression. But continued bad/sad days mixed

> > with no desire to do the things that usually give you pleasure is.

> > Depression is a very real condition and it MUST be taken seriously. You

> > need to find a psychiatrist or psychologist. There is no shame in

> > getting help, the only " shame " would be to ignore it and thereby, miss

> > out on the joys life brings. My theory is : 1st - make sure you well (

> > other than the CMT or that there'd been no advance you'd not been aware

> > of ) by checking with your primary care doctor. If you check out well,

> > go to a psychiatrist or psychologist.

> > What I's saying in this post is memory loss is NOT a direct effect

> > of CMT, but your CMT can cause one to experience depression, along with

> > a whole lot of other negative thoughts which can cause depression and

> > problems with memory. It'd be comforting to say all our problems were

> > caused by CMT. That reason would be so comforting, but so untrue. We

> > have CMT but, unfortunately we are still subject to any disease any

> > others without CMT can get. The flu's bad this year if a friend gets

> > it, that awful but if we get it, it's it will be 10 times worse,

> > according to my Neurologist. Use caution! Didn't mean to go on so

> > long.

> >

> >

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