Dear Ivan,
first a quote from my mail to clarify that I, like you, suffer the dystonia
in wearing off periods.
Quote:
At An important difference between the two states of hyperkinesia is that
the end of meds one is combined with high muscle tension end
the other much less so. This makes the former the most troubling one.
During the former walking is more impaired or impossible.>>>>.
In fact the phenomenon you describe as a strict end of dosis one seems te
be exactly the same as the state I used to call "my cold turkey". The rapid
tremor with small amlpitude
seems to be shivvering from cold, but at that moments one suffers from
excessive heat. As the years passed added the wearing off symptoms of the
first years,which were like the ones you describe changed. The existing
symptoms were complicated by the urge to move and after yet more years by
real dyskinesia: involuntary movement,
During a part of my first consult with the neuro's of Amsterdam, who did my
pallydotomy I was in a wearing off phase like that, yet more heavy than
normal because I was stressed by the situation.(This symptoms indeed are
much worse and lasting when one is stressed. One of the neuro's
immediately asked my permission to videotape me, which I gave.)
When I was hospitalised for surgery I was examined to by other neuro's.
That is a normal procedure in a university hospital where much research is
done. Many of them said they first understood what I was talking about,
after seeing that videotape. So the thought came in my mind it might be
possible to prevent much misunderstanding in discussing this things if we
could show each other at a videotape just what it is we are talking about.
Maybe somewhere in the near future that will be possible. But now we have
to use our verbal and "listening" skills.
Reading about people who use sinemet as a 'sleeping pill, I do realize how
different our reactions on drugs are.
Ida Kamphuis
>>Dear Ida,
>>
>> I found your observations on diphasic dyskinesia VERY interesting. You
>>wrote about the muscle tension associated with peak dose dyskinesia, but
>>its absence in the second form of dyskinesia, associated with the latter
>>part of a dose.
>>
>> I experience a kind of "rubberiness" at peak- or over- dose, where my
>>neck is impelled to sway in soft, undulating, almost rhythmic
>>oscillation. This "rhythm " feels externally controlled, almost as if I
>>were a marionette.
>>
>> The more dystonic dyskinesia that you associate with peak-dose states, I
>>have seen so many times, especially in what seem like over-medicated
>>states, in other PWP's. I have seen a jerky, "flailing" of the arms,
>>accompanied by great rigidity, in many PWP's, but I myself NEVER
>>experience this peak-dose stiffness,nor any movements associated with
>>weird, abnormal muscle positions.
>>
>> To these two forms of excess motion, I would add a third type, and I
>>wonder, do you or Dennis or David ever note this in yourselves or others?
>>
>> It is a STRICTLY end-of-dose phenomenon. There is very rapid and
>>forceful tremor of the arms. It can occur to me while sitting in a
>>chair, while rising from a seated position, or while trying to walk. It
>>is associated with back-of-the-neck sweating, and leaves me extremely
>>immobilized, and precedes a deeper-than-usual off state, with very tense
>>forearm muscles and great arm pain.
>>
>> It's as if I have depleted my reserves of dopamine, and maybe something
>>else. I almost wonder if TWO chemicals are depleted, i.e., dopamine,
>>which might in insufficient supply cause some sort of muscle tightness,
>>or rigidity, and a chemical "x", which would allow smooth, rather than
>>"cogwheeling" voluntary movement.
>>
>> Is "x" adrenaline??
>>
>> This rapid end-of-dose arm shaking is so bad that for at least ten
>>minutes, I can barely move my arms from the shoulders down, and
>>meanwhile, I start pouring with perspiration.
>>
>> It's not really surprising that so many neurologists say to us PWP's
>>that we seem to know more than they do. We experience symptoms of dose,
>>overdose and end of dose that they rarely would see, unless they would be
>>willing to spend hours watching us.
>>SNIP
>>
>>Ivan Suzman
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Vriendelijke Groeten / Kind regards,
Ida Kamphuis mailto: [log in to unmask]
