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Barbara, Your dystonia could be from lack of levodopa. I get foot dystonia when my sinemet dose is wearing off. Most often in the morning. There are other PWP's that have the same problem. Greg 48/35/35 ----- Original Message ----- From: barbara <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, August 23, 2001 3:46 PM Subject: levodopa side effects...need help > 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