Joined: 22 Feb 2006 Posts: 11 Location: New Jersey, USA
Self-diagnosed (as An Adult) Tourette Sufferer Posted: 11-21-06 11:53am
All through my childhood I had a variety
of tics, both motor and vocal.
It was never diagnosed or pursued, as my
older brother had learning disabilities
and acted out in school. He was always in
disciplinary trouble, and was going to
multiple child psychologists at the time.
I'm now 45 years old. At that time, very
little was understood about either
learning disabilities (my brother) or ts
(myself).
I learned to control the tics as much as
possible. However in times of stress, I
would find myself completely overwhelmed
by the tics.
Later in life, I developed chronic back
and neck pain. I very belatedly came to
several conclusions about myself.
One was that "they" only recently
recognized that there are milder forms of
ts. Not just the version portrayed in the
movies and tv, where the sufferer is
cursing uncontrolably in addition to the
tics. I only ever had motor tics such as
blinking and head jerking. My vocal tics
were merely easily hidden grunts.
Otherwise, my life was pretty normal.
I began to realize that I have a somewhat
lesser version of ts.
Also, my orthopaedic doctor was amazed
that one side of my neck was highly
arthritic and damaged, whereas the other
side was essentially normal. I belatedly
realized that this was the long term
damage of the head jerking of my youth. I
thought it was important to mention this,
as it shows that tics are not necessarily
harmless inconveniences. I am truly
suffering now from the long term effects.
I went last year to a neurologist with my
suspicions and findings. Of course she
cautiously ruled out all other
neurological possibilities first.
She then placed me on haldol. This
effectively stopped the tcs, and showed me
there was hope. However with time I
developed a sensitivity and dyskenesia
began. This was a frightening condition
in which my feet in particular began to
move randomly. I also developed abulia,
which is basically the feeling that you
are becoming stupid, but don't know quite
why... Sort of a mental fog that you can
just barely feel creeping in. This was
worse than the tics because I felt as if I
had truly lost motor control over my own
body, and felt as if my iq had suddenly
dropped several points.
I had to "detox" for a couple of weeks,
then she put me on orap. This has been
very effective for a longer period of
time. However I am finding that I feel
restless, which I can live with. But
worse is that my speech is becoming
slurred. I see the doctor in a week.
Meanwhile I didn't take my morning dose of
orap. I wanted to see if my speech
improved. So far, only mild improvement.
However, I can feel the tics sort of
creeping in and 'trying' to come out. One
missed dosage and I already feel a
struggle for control. However I know that
the doctor will invariably tell me to stop
the medication and detox once again before
starting me on something new.
My question for anybody out there... Is
there another medication that you found to
be effective?
Obviously this condition can be controlled
through medication. However the side
effects can become difficult, if not
intolerable to live with. At least that's
been my experience thus far.
Any shared experiences would be
appreciated.
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blulyneguy
Experienced User , Rather EHEALTHy
Joined: 09 Jan 2007 Posts: 334 Location: Idaho,
Ts Meds Posted: 01-09-07 17:38pm
Have you tried clonidine? Great for tics.
I have a great background in ts. I am 35
and my son is 7 and we both suffer from
it. Let me know if you have any
questions. Look on the medicine
encyclopedias for the usual usage but ask
your Dr. About it for ts usage. So far,
so good! Good luck