Hello,
I have to disagree with Ivan on this one, it has been my experience
that Toe curling, and dyskenesia in general are definitely side effects of
dopamine,(Sinemet or Madopar) and are not symptoms of the disease itself.
Despite having had PD for 12 years now I am fortunate ?? enough not to
need any dopamine to get me through the night, I usually take my last dose
at approx' 5.30 pm, not taking any more until approx' 8.30 am the following
day. I experience no toe curling or dyskenesia throughout the evening or
during the night and it doesn't re-appear until after I have taken my first
dose of dopamine the following morning, then subsequently with the uptake
and wearing-off of each dose. I would also add that in my case toe curling
and dyskenesia have been almost totally eliminated by changing my dopamine
agonist from Pergolide to Cabaser ( Cabergoline ).
Regards,
Nigel, age 46, diagnosed at 34
----- Original Message -----
From: "Ivan M Suzman" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, August 24, 2001 9:00 AM
Subject: Re: levodopa side effects...need help
> Dear Barbara.
>
> I HAVE SYMPTOMS , not side effects, in my toes.
> Without medications like Sinemet, or its generic
> equivalent, I would probably be dead.
>
> Greg Sterling mentions other PWP's with levodopa
> causing relief from toe curls. Count me in that group.
> I believe that these curls are the underlying disease
> itself, advancing in visiibility and causing more pain
> as it progrsses.
>
> Ivan Suzman
> 51/39/36
>
>
> On Thu, 23 Aug 2001 20:46:06 +0100 barbara <[log in to unmask]> writes:
> > Hello Everyone,
> >
> > My neuro said my pain from cramping foot/leg and dystonia are side
> > effects
> > of levodopa.
> >
> > So...now the side effects are worse than the parkinson symptoms.
> >
> > I have tried all the agonists, they all gave me side effects so
> > badly neuro
> > took me off each one. Mirapex was the last one I tried, feet and
> > legs
> > swelled until small blood vessels broke, feet wouldn't fit into
> > shoes.
> >
> > Now neuro says since all pd drugs have made me worse than before I
> > took them
> > I should consider DBS surgery.
> >
> > I could use some encouragement from anyone who understands the
> > sensitive to
> > pd drug person.
> >
> > There must be someone out there like me.
> >
> > I was diagnosed 6 years ago, I am 53. I took sinemet during the day
> > 100mg X
> > 3. I could see no improvement in my pd symptom of right side
> > tremors. Neuro
> > said I was under medicated because he could see my tremos,
> > increased my
> > dosage and tremors stopped while medicated. After 6 months side
> > effects
> > appeared and agonists were tried, each leaving me with more pd
> > symptoms,
> > more tremors and then stiffness. My progression after increase in
> > levodopa
> > and trials of agonists and other pd drugs has been very dramatic.
> >
> > I now feel ill now when I take levodopa, nausea, headaches,
> > weakness, mental
> > fog, depression. When I am off levodopa I am stiff with severe
> > painful
> > cramps, if I am strong enough to keep moving through out the day I
> > can
> > control some of pain because cramps start when I don't move. When
> > I am off
> > levodopa I feel happier, no nausea, headaches, mental fog or
> > depression.
> > Just have no use of right hand and drag right foot unless I stop
> > moving..then pain begins.. Tried the anti-cholerigenic drugs....not
> > helpful.
> >
> > I no longer take levodopa during the day unless I must have more
> > mobility
> > for traveling, dentist, etc. When I take levodopa during the day I
> > have a
> > difficult time breathing and when it wears off the cramping is much
> > worse.
> >
> > Since I developed the side effects I cannot get to sleep with so
> > much pain.
> > Neuro first put me on 25/100mg CR at night increased to 50/250mg CR
> > ....still I would wake up with severe cramps when drugs wear off.
> >
> > I am forced to take levodopa at night to stop cramps and sleep in
> > between
> > doses...when cramping begins from drug wearing off I must take
> > another
> > tablet and endure great pain until I switch on, can relax and sleep
> > a bit
> > more, must have crackers or applesauce to stop the nausea.
> >
> > I felt so good under or non medicated with no side effects. Did not
> > realize
> > then how lucky I was.
> >
> > I have tried calcium, magnesium, vit E, muscle relaxants, NADH,
> > selegiline,
> > sleeping tablets, acupuncture, meditation, massage, etc Searched
> > the pd
> > archives and internet groups for answers.
> >
> > I know 2 other pwp's like me they medicate 24 hours a day and can do
> > so
> > without nausea etc.
> >
> > If there is ANYONE out there who understands.....may be going
> > through what I
> > am....PLEASE write to me via e-mail address. I cannot sit long
> > enough to
> > receive digest. I have to stand and shift feet as I type this.
> >
> > I can see what I wish I had done.....cannot change the past.....how
> > do I
> > continue this way. I don't like taking levodopa to stop side
> > effects, I
> > wish I could take it for pd symptoms only.
> >
> > I have not had a good nights sleep since the side effects began.
> >
> > I feel desperate......am I a hopeless case?
> >
> > Each day and each night becoming more difficult. Feel too weak for
> > surgery.
> > Still retaining water since Mirapex.....may have caused some kidney
> > weakness.
> >
> > Sorry this message is so long......
> >
> > Appreciate any encouraging replies....like a cure is coming soon...M
> > J Fox
> > says within 10 years....
> >
> > Thanks for listening...
> >
> > Barbara
> >
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