Bill you wrote:
I used the term "internal tremors" to describe what is clearly and
technically called akathisia. This internal "tickling" or "antsiness" is
impossible to describe to others who have not experienced it.
Jerry, you wrote:
Akathesia is the inability to sit (or stand) still, but it is also a feeling of
inner restlessness that is difficult to describe. Again the Dopamine &
Cholinergic systems are out of balance.
Janice you wrote:
Well, with akathisia, no matter how many positions you try, you still feel
agonzingly Uncomfortable, so much so that you feel you have GOT to get out of
that bed and walk around.But then the same awful feeling returns and you think,
"I've GOT to lay down" -- and on and on it goes until finally the "torture"
goes away. Can anyone identify with my description or am I weird?
Phil you wrote:
It's frustrating not only to experience this sensation, but also to
have to describe it to people who never themselves felt it, and that
is the vast majority, a good number of doctors included.
There seem to be standard terms for describing many of the symptoms
which are subjective sensations, in this case, "restlessness" or
"akathisia", and if we don't happen to use the right words, we may
not be heard. It pays to learn and use the vocabulary of one's
condition.
Dear Phil, Janice, Jerry and Bill,
It seems we are speaking all about the same thing. It is a tormenting thing
and everyone who suffers from it does not need much words to recognise it. It
is about having to move
when wishing not to. In the concept of akathisia one has to move, but one can
choose how. In the concept of dyskinesia the how is too beyond choice. A
question: is the one an aggravation of the other or are we talking about
fundamentlty different things .
I write this because I agree with the last sentence of the quote from Phil
(above).
It is useful to be able to descibe ones symptoms. Reading the symptoms of
others is helpfull in understanding ones own symptoms.
Another important thing is to try to determine what the connection is between
these symptoms and the use of sinemet.
After reading the mail my first association was with how I felt a few months
before diagnosis. It was summer 1984. We, my husband, my children and I were
on holiday and camped in the mountains. We all like to make long walks and
climbs.
Having done so and being tired a nice thing used to be the relaxed feeling
which came when resting a whole day sitting on a stone in the river with a
book, hardley reading, doing nothing without being bored. Exactly that was
impossible that holiday. As soon as I tried to relax I felt an inner tension
and had to do something. I slept very badly and was deadly tired when home
again, but was unable to relax too. I could fight the inner tension only by
concentrating on something else. It was all very disagreeable.
The need to move was more felt as an inner tension than an antsy feeling in the
muscles
A few months after this I started using sinemet. I have always had some wearing
off dyskinesia. I wrote about two different kinds of dyskinesia some months
ago: one that is caused by too much dopamine and the other that is caused not
by a mere lack of dopamine, but by the end of the meds. The top of meds
dyskinesia is not really torturing . It consists of involuntary movements
with a normal muscle tension. The movements are mainly in the trunk and don't
ask much attention. They can be prevented by reducing the sinemet level. This
is surely not the same thing as akathisia.
The other dyskinesia (or is it akathisia?) can be prevented only by taking no
sinemet at all. It is combined with a high muscle tone, is in the limbs, mostly
the legs, and makes concentration on something else nearly impossible. When one
says something is torturing other people think it is painfull, which is not the
problem. It was litterally true that sometimes I had to hang on the arm
rests of a chair to stay seated. I could walk up and down the room, getting
fatigued and wishing to sit. It could be a bit easier when I started to move
before I had to. In that case the muscle tonus used to be less. It seems these
symptoms fit more in the concept of akathisia as described by Charlie.
The last one and a half or two years however, the wearing off symptoms got
more serious. I can only describe them as wild dyskinesia without more than a
little bit of control and during which trying to walk causes grotesque
movements. This is more invalidating and torturing than being off has ever
been. I feel myself this dyskinesia as an enlargement of the other.
Much PWP's don't sleep due to restlessness. For me that has stopped to be a
problem
as soon as I started to use dissipal.
Please comment on this. If the symptoms you mentioned can be seen as a function
of your sinemet level, you might be able to have influence.
Ida Kamhuis
Holland
