Autonomic Nervous System

terence terence_lambeNOteSPAM at hotmail.com.invalid
Wed Apr 5 10:21:58 EST 2000


Dear Friend,

I am hoping that you can give me some advice regarding my
TOURETTES SYNDROME condition.  I have had to change my e-mail
address.

I am 32 years old and was only diagnosed with TS last year.  My
General Practitioner mis-diagnosed me and his treatment led to a
serious worsening of the condition with strong feelings of
SUICIDE.  I have suffered from severe tics aggravated by anxiety
for years, especially of the head, neck and shoulders.

Last year I saw a Neuropsychiatrist  who diagnosed me with TS.
He has experimented with 29 drugs including anti-psychotics and
anti-depressants with no impact on my current major symptom.
This symptom is an acute obsession with my breathing .  I have
been hospitalised 5 times and my specialist has considered ECT
so you can appreciate my situation.  My specialist appears to be
at a loss and is now referring me to the UK’s leading TS
specialist, Professor Mary Robertson, but this will mean a long
wait.  I am also concerned at initial reports that Prof.
Robertson has not come across the problem before.

I think about my breathing problem all day long, as I used to
think about the tics.  The tics were suppressed using
Haloperidol and I believe the breathing problem replaced the
void left by absent tics.  I reacted extremely  severely to the
haloperidol and all the other anti-psychotics being very
agitated.  I think the agitation was caused by tension build up
because of the absence of the tics which had released tension.
I had only been on small dosages.

My specialist has treated my breathing problem as an obsession
and used anti-depressants to counter-act this.  When this failed
he treated the problem as a tic and used additional tic
suppressants, which again failed.

I tend to breathe heavily from my upper chest causing severe
chest pain, headaches and dizziness.  It feels like a constant
battle for air.  The problem is obsessional  and is creating
severe depression.  However, on rare occasions I manage to re-
establish breathing from my abdomen and I feel slightly
less depressed.  Unfortunately, this does not last long but it
shows that breathing = depression rather than the other way
around.

The breathing obsession has replaced the tic obsessions so it
seems natural to restore stability by restoring  the tics, which
will also release pent-up tension.  My specialist has tried me
on drug-free periods to see if tic replacement occurs, but
because of the sheer dominance of the breathing problem this has
not happened.  He is also suggesting attempting to re-establish
the tics with AMPHETAMINES but this would be a drastic solution
with no guarantee of success.

Several doctors have told me that breathing tics are common but
these seem to be as a result of interruption of the breathing
pattern, as with coughing or sniffing habits.  My problem is an
obsession with the BREATHING ITSELF, an awareness of breathing
in and out.

Since seeing my GP I have felt suicidal for over 2 years. I
never felt suicidal before, although the tics and anxiety
caused  (comparatively) mild depression.  The breathing problem
seems IRREVERSIBLE which is why I lack hope especially after 29
drugs!

Everyone seems to be running out of ideas to help.  Yet there
must be someone out there who has experienced my problem, and a
professional who has treated this problem before.

1) Is there any similar experience or research that you know of?

2) Can you suggest drug treatments or  other strategies (eg. I
believe that in some behaviour therapy one tic can be ‘swapped’
for another).

3) If the problem is TS is there anything I can do about it
anyway?

4) Are there any potential drug treatments in the pipeline that
may help?  What is the future of TS?

5) Can you recommend other e-mail contacts?

I’m sorry to trouble you with my problem and would not do so if
it were not so serious.  I would be grateful for any advice you
can give and look forward to hearing from you.  Many thanks,

Terence Lambe


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