On and Off periods: I take c/l but don't... - Cure Parkinson's

Cure Parkinson's

26,569 members27,876 posts

On and Off periods

bigl62 profile image
9 Replies

I take c/l but don't experience an "on or off" periods. What does that mean?

Written by
bigl62 profile image
bigl62
To view profiles and participate in discussions please or .
9 Replies
Enidah profile image
Enidah

What kind of meds are you taking and when were you diagnosed? I didn't have any on off for the first few years.

bigl62 profile image
bigl62 in reply toEnidah

Nov 2016 C_/ L

Juliegrace profile image
Juliegrace

That is a good thing as long as the c/l is helping you. It may change in the future, it did for me as time and PD has gone on.

grower profile image
grower

That's an interesting question, I don't either, but at 6+years since diagnosis I'm just starting to feel like I need another one just before I take it so I guess it's coming. It seems to depend on the severity of your symptoms but some folk "run out" of the benefits of the extra dopamine in the c/l before it's time for another and so have "off" times.

ekw513 profile image
ekw513

That means you should be very happy that your meds are working

bigl62 profile image
bigl62

What I mean by no On is no symptom releaf. Iam always Off no matter how much medicine I take

gwendolinej profile image
gwendolinej

Hi there, my husband was initially diagnosed with LBD (Lewy BodyDementia) in 2012 and put on Madapar levadopa). It seemed to have no effect. The neurologist then added the Neupro patch. Within a few weeks, the change was so great, his diagnosis was changed to Parkinson's.

The neurologist ( through the Movement Disorder Clinic he was attending here in Australia) then measured the effect of the levadopa on him, using the PKG watch, which measures the effect immediately after taking the medication. In my husband's case, it showed a small change, which only lasted for a short time . My husband, like you, felt nothing.

Somic67 profile image
Somic67

You mean that L/C meds are NOT effective for you? Then Why do you take them?

what happend if you stop L/C meds? No change or what?

My personal opinion is that L/C cronically depletes various substances necessary for the CNS to work well. Inspired by Doc Hintz works, I think to a sort of storage - (dopamine, vit B6 first) that is depleted pregressively until it is empty and when meds are gone your body cant compensate any more and you simply go out of beer. this takes time to go to zero depending on meds, age, nutrition, supplements, etc

bigl62 profile image
bigl62 in reply toSomic67

If I don't take c/l my freezing and loss of words get a little worse

Not what you're looking for?

You may also like...

sudden horrible off periods

after nearly 30 years dealing with this awful disease, I’m experiencing horrible wearing off...
Mimi828 profile image

STILL HAVING "OFF PERIODS" PLEASE HELP

Hi Friends, I am in the group of pwp that takes alot of sinemet over a 24hrs period.I would say 11...
OREOLU profile image

WHAT DO "OFF" PERIODS FEEL LIKE?

Sometimes i am not sure if i have Dyskenia or if i am having Off times? Can anyone explain what...
RS313 profile image

Anyone here who don't have 'off' periods?

Just curious. I have some PD signs but I don't have off times. Is that common or no?
kaypeeoh profile image

WHAT DO YOU USE FOR "OFF" PERIODS? HELP PLEASE!

Hi Fellow parkies/caregivers, If you are still on regular generic Sinemet( direct release), what do...
OREOLU profile image