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Dear Larry:  thank you for your message re your experience with RLS.  It was
thought provoking and I wish you would go public as I know there are a few of
us on this board who are grabbing at every straw trying to relieve this
scourge.
 
No - I don't think my RLS is drug induced as I've had a mild form for several
years and was taking nothing.  It was getting progressivly worse but
controlled by massage and exercise, and only came on in the evening.
 
I had a pallidotomy May 21, l993.  Soon after the excitement of the PD relief
cooled, I realized my legs wern't bothering me anymore.  However RLS started
slowly returning about seven months later.  It didn't start bothering me
until June l994 when the shock waves and muscle spasms started just as soon
as my Sinemet wore off.  I can't walk it off anymore.  Massage and exercise
only work whilst doing same.  Once stopped the sensations return and it is
devastating.
 
As you are doing, I too am trying a variety of tactics to deal with this
problem.  Bromocriptine (Parlodel) read promising so I tried it.  Smallest
dose drove me up the wall.  I was to ease in by taking a half a 2.5 mg tablet
at bedtime for a week.  I took  it for two nights and had to quit - the first
night I slept like a baby, woke up refreshed - no leg problems - by 9 a.m. I
was jittery, tremors, panicky, depressed.  Decided it was just temporary and
my own fear of drugs, so I spent the day walking it off.  It all lifted off
by suppertime and I felt "normal" again and decided to try again - big
mistake.
 
The second night I again slept well, woke up refreshed but noticed flashing
lights like a light bulb wearing out.  I had noticed this the first morning
but figured I had slept with an arm over my eyes and forgot about it.  Still,
I felt really good this second morning and didn't have a sign of RLS - as you
did I thought bromocriptine was miraculous.  Until 8 a.m. when all hell broke
loose - same  as the first  morning doubled.  The neurologist told me to stop
taking it and take 5 mg valium.  I took 10 mg and slept all day - the
untoward reaction to bromocriptine had worn off and all was right with the
world again.
 
So now I am back to square one trying to find the best schedule with Sinemet
CR that will deal with RLS.  Since it is a 24 hour thing with me I am taking
Cr 25/100 at mealtimes - bedtime - once during the night for a total of 500
mg levodopa.  A far cry from what I needed prior to June when 300 mg or less
covered my PD adequately.  I've had PD for eight years and coped nicely and
was never depressed.  RLS has me stumped.  We make jokes about most doctors
not knowing a thing about PD.  NOBODY knows what's going on with RLS.
 
BTW, besides the Sinemet I take vitamin C 500 mg at each meal,  800 IU's
vitamin E three times a day, beta carotene 10,000 mg twice a day,  one
multi-vitamin, 1000 mg calcium and 500 mg magnesium, STRONG laxative twice a
week.  When dystonia of my gluteus minimus rears itself (pun intended) I
indulge in a 222 (aspirin with 8 mg codeine). I, with hope in my heart, read
all the labels in the health food stores.  Get a deep muscle massage once a
week.  Am looking into acupuncture.  Read about alternative healing -
Naturopathic and Homeopathic
medicine - am not discounting anything that makes even a little sense to me.
 Would love to go to a real health spa, calonic irrigations and all.  I walk
a lot.  Last but not least I soak in some weird green salts my Vermont
earthmother daughter gave me...guaranteed to do it all.
 
So Larry, if RLS gives you insomnia tonight, get on board and tell us all
what your ideas are re this torment.  It has a fancy name - AKATHISIA.  There
is also a support group called "Night Walkers."  Plus a RLS Foundation.  But
they don't seem to feature PD at all.  Dr. C.G. Goetz at Rush-Presbyterian in
Chicago did a paper "Akathisia in Parkinson's Disease" for Movement Disorders
journal last year which is kind of interesting but not helpful.  What can I
say - a devastating "orphan" disease with no money for research.
 
Barbara Yacos
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