Patients improve after levodopa wear off: paradoxical "on"
 

Hi,

I ran across this article and found it interesting. Even if only four people...means others are experiencing it too. The "it" is a prolonged period of "on" time or time where patient feels near normal long after a medical dosage has worn off. This is like an hour after wear off meaning this entire experience is highly unusual. I am wondering if this isn't further indication that all of our cells are on an inevitable path of self-destruction; that in fact, many of our cells are merely impaired or "stuck" somehow? Has anyone experienced anything like this? This also serves to highlight how hard it is to study advanced PD when medication masks everything

Novel pattern of levodopa-related motor fluctuations: ‘Paradoxical’ on

-Laura

Stories
 

We were discussing this recently,a bunch of PWP,one of whom had acquired a lathe to turn wood ,he could immerse himself for hours as soon as he stopped he couldnt function .Others responded with similar stories

Hi Laura,
I have had a number of occasions when I suddenly switch on whilst unmedicated. I have posted about it before, but have not found anyone else who experience it. It happens either on getting up from bed or when my meds have worn off. As I mentiomned in another thread, the phantom "on" seems to be initiated (but not always by eating. The longest on time I have seen is 90 minutes.
Very pleased to see your post, I was starting to think it did not happen to anyone else.
Ron

I experience a similar thing almost routinely at night. Typically, I take the last meds at 6:00 PM and am OFF and in bed by 10:00. If I awaken at midnight I find that I am again ON and can get up and remain so for as much as 30 minutes or so.

I agree with this because I also own a wood lathe and can turn for hours without medication. As soon as I stop I am in trouble. It is as if....... how to explain...... As if I am in another body that does not have PD. All of my focus is on what I am doing not on what my body is doing. Once I stop and become aware of reality I can't walk, the tremor returns, and postural instability returns. I think that is why I keep turning. It has become an escape for me.

GregD

clue may be in the details
 

I would think that a daily log of what time of day this extra "ON" is occuring, last meds/dosage and most importantly, WHAT activity were you engaged in prior to the extended ON time would be helpful so that you might be able to replicate it. Exercise does it for me.

TG

everything is relative
 

Hi Laura,

After two years taking sinemet (1 tab 10/00 3 X per day), I have been experiencing a systemic improvement as well as acute improvement with the med... using both an hourly trajectory vs overall well being . altho I am at my best in morning and afternoons. the boundary between "on" and off was in the beginning very fuzzy and only recently is more acutely apparent tho more like switching a light off and on with a dimmer switch and the light is steadily getting brighter.

I notice I always tend to improve in the Spring. Also a while back Janice W-Hadlock mentioned t hat she observes a 23 day cycle of in PWP.

kind regards
md (pd sx since 94)

Wondering if ...
 

Interesting that many people experience this. This "on" in the article is not to be confused with that good half hour we sometimes have in the morning due to sleep benefit or dopa reserves. In fact, it's odd, the people involved would actually feel worse upon dosing then do well, hit wear off, then bam feel great like an hour after their dose wore off. This was so marked that some people would skip a dosage. I think this is a combo of us tapping into our natural dopa reserve and our bodies reaction to med withdrawal abating.
I really think the harsh on-off effect is due to drug dependency and our heightened symptoms are like a withdrawal effect. I underwent a 12 hour drug washout last October and surprisingly despite a prominent tremor did okay; I noticed that I only felt brain foggy upon taking a dose of Sinemet in the doc's office; it went away after drug kicked in.

How many of you feel brain fog when in these "on" states? Again, based on my experiences, I think the brain fog is a withdrawal symptom. I feel it when meds starting to kick in or not at all.

Any other thoughts?

MD, what do you mean by "23 day cycle"?

Laura

to everything turn turn turn
 

[QUOTE=Conductor71;71386

Any other thoughts?

MD, what do you mean by "23 day cycle"?

Laura[/QUOTE]

JWH observed that her patients as a group experienced fluctuations of well being to symptoms worsening together that cycled every 23 days. I take comfort in knowing that when I'm low that in "time" this will be followed by bettter days ahead and that has certainly been true for me. thats just natures way.

maybe we all vibrate to some planet out there ? (not kidding ) -what a complex and manificent world (universe) we live iin!:grouphug:

love your intuitive thinking Laura !
md

brain fog
 

As a PWP virgin not on meds, I have been trying various vitamins and supplements over the last few months, some such as CQ10 and Riboflavin having no discernible effect

Others -induced your aptly named 'brain fog' - (difficulty thinking logically, transposing numbers on spreadsheets in my job, and wrong use of words when talking)

Iradapine - Blood Pressure Calcium Blocker - undergoing trials to see if it slows PD - I stopped taking after 3 weeks
Coconut Oil - Stopped after 3 days - muzzy head
Evening Primrose Oil - induced a 24 hour headache each time

I was uncertain if the 'brain fog ' was leading to positive or negative effects, so chose to stop taking them.
In the light of your post, it appears that they act to some degree like meds ?
Not having taken meds, I'm not sure if a degree of 'brain fog' is expected ?