Hi Gail.
I can understand your situation, I think we all struggle with dosing our
meds. Even though I was diagnosed with PD 17 years ago, at age 46, I label
my situation as "moderate" PD. For better (I think) or worse, my movement
disorder specialist encourages me to experiment (within reason) with my
meds. I've tried Sinemet, Sinemet CR, Stalevo and Rytary. I've also been on
a couple of agonists (Requip, Mirapex) with disastrous results (impulse
control disorder) and a long and difficult withdrawal. So, I might be able
to offer some perspective, with the usual disclaimer that I am not a
medical professional, my comments should not be misconstrued as
recommendations and any changes you might consider should be approved by
your doctor. Having said that, I offer the following from my personal
experience:
- Know thyself: PD, as you know, is not one-size-fits-all. Each of us
reacts differently to the disease and to the meds. I have tried (somewhat
successfully) to identify objective circumstances (eg. tremor in my left
arm, stiffness in my back) which signal that I am getting low on
carbidopa/levodopa (C/L) or have more than I need in my system. I've gotten
to know my dystonias (spasms, etc.) and dyskinesias (head rocking) and,
importantly, what it feels like to be "on". I have found this knowledge
indispensable for trying alternate dosings. (BTW, my back stiffness and
pain are the result of excess C/L, not a lack thereof.)
- Symptoms have many causes: I find that, day to day and even hour to hour,
my symptoms change - they get worse when I'm stressed or anxious, or when
I'm tired, or hungry. Some times the meds have no effect after a meal and I
have to double up. Some days it seems like I just can't get the dose right
There are numerous causes. I've found it useful to identify my triggers so
as to distinguish when my arm is trembling due to stress vs lack of meds
- Meds are not constant: If you look at a chart of the amount of C/L in
your blood in relation to the time elapsed since you took the meds, you'll
see that, in the case of standard C/L 25/100 mg, that the blood
concentration climbs to a peak in a half hour or so, then declines, with a
"half life" of an hour to hour and a half. So, if we use your example, the
chart of C/L concentration would look like saw teeth. I have found that,
using a dosing level of two pills and an interval of two hours, I can avoid
the depths of the decline and maximize my "on" time, my time in the
"therapeutic window". (More of this technical stuff can be found by
searching for pharmacodynamics and pharmacokinetics of the med in question).
- Meds can "confuse" symptoms: Many mornings, I am almost asymptomatic for
1 to 3 hours after get up (which I attribute to the release of dopamine
during the sleep cycle and just being, overall, relaxed). Within minutes of
taking my first C/L pills, I get noticeably worse and it takes 10 to 20
minutes, sometimes more, for things to stabilize. My theory (unconfirmed)
on this is that the dopamine flooding the brain is absorbed nonuniformly,
causing an imbalance. So, say the area controlling movement on the right
side of the body absorbs dopamine faster (or has more neurons to absorb it)
than the part that controls the left side, the symptoms may change more and
faster on the right side. For example, sometimes after taking a round of
pills, my left leg will spasm while my right leg is just fine. This kind of
imbalance often forces a compromise between symptoms.
- Beware the placebo effect: There seems to be a recognition in the
literature that the placebo effect is quite significant with PD. I've had
some experience with my expectations clouding the interpretations of my
meds experiments.
- Consider keeping a log: I'm really terrible at keeping logs, but have no
doubt as to their usefulness. Start simple, maybe tracking "on" and "off"
periods along with med timing. See if there's a correlation or pattern.
Maybe add a symptom or two to the tracking log. You might observe, for
example, that a tremor gets worse long before the next scheduled dose,
suggesting a shortened interval between doses.
- Remember, you're shooting at a moving target: PD symptoms change with
time, and a med regimen that works  well today may not be optimal three
months from now.

OK, I've rambled on quite enough. Please forgive my verbosity. Again, from
my perspective, these are things that I've had to consider when
contemplating adjustments to my meds. I'm still learning. In the meantime,
I feel that I've gained some more insight as to managing my days.
Cheers.

Roger Seymour

On Mon, May 7, 2018 at 8:30 PM, Gail Adler <[log in to unmask]> wrote:

> I have been silent on this list server for a number of years. I don’t know
> why but I decided to read the recent posts and find them helpful. I take
> sinmet 125/100 3times a day 4 1/2 hours apart and one sinmet Cr as a final
> dose. I don’t tremor much anymore but I have a lot of stiffness and back
> pain. I’ve been rather fearful of increasing meds so haven’t had much
> relief from them.  How do you decide with dr to do Med changes? How can you
> tell if the meds are working .
>
> Gail
> Sent from my iPhone
>
> > On May 6, 2018, at 6:56 PM, Rayilyn Brown <[log in to unmask]> wrote:
> >
> > https://startsat60.com/health/big-issues/parkinsons-
> breakthrough-means-sufferers-could-sleep-through-brain-surgery
> >
> > Ray
> > Rayilyn Brown
> > Past Director AZNPF
> > Arizona Chapter National Parkinson Foundation
> >
> > ----------------------------------------------------------------------
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