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Good point. One possibility is that you are having "wearing off" or end-of-dose effect between doses. One way to find out is to keep a log during the week of the times you take the medicine, and the times that this symptom occurs. If it tends to occur shortly before the next dose, it may be "wearing off" effect. Jorge Romero, MD ----- Original Message ----- From: "Greg Sterling" <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, August 23, 2001 3:34 PM Subject: Re: levodopa side effects...need help | 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn