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----- Original Message ----- From: Greg Sterling <[log in to unmask]> To: Nigel Harland <[log in to unmask]> Sent: Saturday, August 25, 2001 10:23 AM Subject: Re: Dystonia vs. Dyskinesia > Nigel, > > Every PWP reacts differently to the disease and the medications used to > control it. There is a big difference between toe curling, dystonia and > dyskinesia. Ivan and I both suffer from wearing off effect dystonia, which > is severe involuntary cramping and twisting of muscles due to lack of > levadopa. Dystonia is part of the disease process in our cases, but may not > be in others. It is painful, and has no comparison to toe curling or > cramping. Dyskinesia is attributed to prolonged sinemet use, but should not > be confused with dystonia. > > Greg > 48/35/35 > > ----- Original Message ----- > From: Nigel Harland <[log in to unmask]> > To: <[log in to unmask]> > Sent: Saturday, August 25, 2001 4:21 AM > Subject: Re: levodopa side effects...need help > > > > 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 > > > > > > > > ---------------------------------------------------------------------- > > > > To sign-off Parkinsn send a message to: > > > > mailto:[log in to unmask] > > > > In the body of the message put: signoff parkinsn > > > > > > ---------------------------------------------------------------------- > > > To sign-off Parkinsn send a message to: > > mailto:[log in to unmask] > > > In the body of the message put: signoff parkinsn > > > > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn