Hello again Ivan,

Just wanted to let you know that since I made the changes you suggested
I have had more on time in the past 24 hours than in the past two
weeks.  Its amazing! and I can't believe my good fortune.

Specifically, all I have tried so far is:
I kept my schedule the same, EXCEPT:
1. I added a 25/100 CR at 5pm yesterday, and was on for the rest of the
evening, until I went to bed.  (Very unusual and almost never happens.)
2.  I added a 25/100 CR at 8am this morning, and am now 'on' and have
been for several hours.  You have to remember, I haven't been having ANY
morning on time, so this is truly wonderful.  I have even done several
chores which have been on my 'to do' list but have been too much for
me.  I am typing with two hands! and am actually glad to be alive.

I have had no signs of dystonia, so all those times I thought I was over
medicated, I was actually under medicated, as you suspected.

I can't thank you enough for your interest and taking your time to share
your knowledge.

Good luck with your concerts,
Walter

Walter Ervin wrote:
>
> Hello Ivan,
>
> Thanks for your concern and detailed reply.  I just now found it because
> my ISP does funny things with incoming messages.  I was looking for your
> reply forward (from the last message), when in fact the isp put it back
> under the subject thread.  I only found it by accident today, since I
> typically run a couple of hundred messages behind.  I think you are
> right on all counts.  ..wme
>
> Ivan M Suzman wrote:
> >
> > Hi Walter,
> >
> > I think what we are discussing has great general value.  If you wish to
> > quote anypart of our conversation and post to the whole List, that would
> > be OK with me.
>
> I agree, and am copying to the list.   ..wme
>
>
> > I have hosted a bass section rehearsal today, and am a little overtired.
> > So please forgive me for spelling errors and murky phrases.  I'll do the
> > best I can.
> >
> > I want to find out more about the dystonia that you have.  I think it is
> > very unusual for Sinemet CR to cause dystonia.  By dystonia, I am
> > referring to hard, tight, painful, cramped muscles, especially the toe
> > muscles, causing them to flex underneath the foot and not let go.
>
> You have described my arm pain - "hard, tight, painful, cramped
> muscles,"  My wife can even find the knots in my arm.  When I am in this
> state, by feet are not in pain unless I try to walk on them, but walking
> causes pain.  When I am 'on', I can walk without pain in my feet.  So, I
> was ASSUMING that my feet are also in dystonia.  However, no curling
> under or pain unless I try to walk.  ..wme
>
> > This is  always (as opposed to sometimes) a sign that I need more
> > medication.  It occurs either if my nighttime meds at 3:45AM are not
> > working, or if my meds during the day are
> > blocked by food, especially high-protein food, or if I am late in taking
> > a dose, so that my dopamine level dropped down too low.. It can last 10
> > minutes to 2 hours.
>
> I'm beginning to agree with you, but the food thing really causes me
> problems.  There is a history of hypoglycemia in our family, and if I
> don't eat I feel terribly weak.  I HAVE to start the day with orange
> juice to even begin to walk.  Funny thing though; if I start with OJ and
> exercise (which also raises blood sugar level), I can do without any
> meds for at least 2 hours.  Then I have to eat and the food blocks the
> meds and I can get no on time until after lunch.  ANY protein at all
> kill meds too.  ..wme
>
> > If I am either too cold, underprotected from cool or cold air, or
> > overtired, dystonia is more likely.  Also if my sugar level is too low.
>
> Same here, but I didn't know the blood sugar level affected it also.
> ..wme
>
> > With Sinemet CR being more slowly absorbed, it is not as effective in
> > stopping dystonia as regular Sinemet, which absorbs quickly.   I use them
> > together.   Regular Sinemet is like first gear and CR like a 3rd gear for
> > highway driving.
> >
> > What I am thinking is that the CR may have been paratially blocked, and
> > that your dystonia was NOT due to CR, but rather to protein or food
> > blockage.
>
> I hope you are right, and I am going to try the CR again, only this time
> try your schedule as much as possible.  However, the CR I have is
> 50/200, and as far as I know, I can only break in two (25/100).
> Question:  When do you eat and how do you avoid protein?  It seems
> protein is in everything.  Is there any difference between ANIMAL
> protein, and vegtable protein (ie beans and rice in combo)?  ..wme
>
> > Maybe the CR never got a chance to work.
> >
> > Also, Walter, did you try it with or without regular Sinemet?
>
> Both ways.  However, I have had too many variables to contend with.  I
> had continued to exercise with light weights until recently, but now
> think that the weights were contributing to the arm pain.  So I cut them
> out too.  ..wme
>
> > If you take only  regular Sinemet, you could crash off it, go into
> > dystonia due to low dopamine, and never have long on-periods. If the CR
> > was blocked, the low-dopamine dystonia would appear CONCOMITANTLY and you
> > could think that this was being caused by the CR that actually  was
> > swallowed, but not getting into your system.
>
> Exactly.  You don't know how many times I have complained to my wife,
> "if I only had a gague to tell me if I'm over or under medicated"!
> Another reason I think you are right, is when I took the CR the pain
> would usually start within 10 or 15 minutes.  And from what you are
> saying, that is too soon for overmedication.
>
> > I take EXACTLY what you do, except that I take two more doses of my
> > Sinemet- Sinemet CR combo, at bedtime and at about 3:45.  I do like your
> > overall medication pattern, except that there is nothing to get you
> > through the night.
> >
> > So the next step is for you to tell me about your use of CR.  If you took
> > it with regular SInemet, it would either  cause DYSKINESIA if there was
> > too much in your system from the two medications combined, or smooth,
> > longer on-periods, if it worked well.
>
> I tried only briefly with regular simemet, had a lot of pain so
> discontinued.  I don't think I have ever had dyskinesia.  ..wme
>
> > If it caused dystonia, I would be surprised.  I just want to be sure that
> > it wasn't dystonia due to levodopa not getting through the blood-brain
> > barrier, not converting to dopamine there.This would be the more likely
> > cause of DYSTONIA.
> >
> > Do you think that the CR could have been taken without adequate
> > absorption?  Did you take it 30 minutes BEFORE eating?  Do you do that
> > NOW with the regular Sinemet?
>
> Not being absorbed is a very real possibility.  I'm trying to allow 30 -
> 45 minutes before eating, and an hour after eating.  ..wme
>
> > My schedule , not the best, but as good as I can manage, is
> >
> > Sinemet (3/4 or 1/2 of a 25/100): 6:45AM, 9:30, 12:15PM, 3:15, 6:15PM,
> > 9:15, 12:15AM
> > , 3:45
> > Sinemet CR (3/4 or 1/2 of a 25/100 CR)  same as regular Sinemet
> > Eldepryl (1/2 of 1 5mg tablet)  6:45 AM, 9:30 AM
> > Tasmar (1/2 of a 100 mg pill) 9:30AM, 12:15 PM, 6:15 PM, 12:15 AM
> >
> > Good wishes for a better day tomorrow.  Look forward to hearing from you.
> >
> > God Bless
> >
> > Ivan  :-)
>
> Thanks Ivan.
> Another question.  How does Tasmar fit in?  i.e. How would you adjust
> your schedule if you didn't have Tasmar?  One BIG variable that I can't
> control is stress.  Even small amounts of stress cause me to go off, and
> then I find myself asking, "is it the meds schedule or the stress"?
>
> Due to the length of this, I am not sending the previous notes.  I am
> also changing the subject so my isp won't 'hide' the note from me.
>
> Walter
> PS  I don't get to spend as much time as I would like to to keep up with
> this list, and am usually behind.  If you copy me on  [log in to unmask]  I
> will find your reply a lot faster, as I get very few messages there.