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Hello Ivan, Thanks for your concern and detailed reply. I just now found it because my ISP does funny things with incoming messages. I was looking for your reply forward (from the last message), when in fact the isp put it back under the subject thread. I only found it by accident today, since I typically run a couple of hundred messages behind. I think you are right on all counts. ..wme Ivan M Suzman wrote: > > Hi Walter, > > I think what we are discussing has great general value. If you wish to > quote anypart of our conversation and post to the whole List, that would > be OK with me. I agree, and am copying to the list. ..wme > I have hosted a bass section rehearsal today, and am a little overtired. > So please forgive me for spelling errors and murky phrases. I'll do the > best I can. > > I want to find out more about the dystonia that you have. I think it is > very unusual for Sinemet CR to cause dystonia. By dystonia, I am > referring to hard, tight, painful, cramped muscles, especially the toe > muscles, causing them to flex underneath the foot and not let go. You have described my arm pain - "hard, tight, painful, cramped muscles," My wife can even find the knots in my arm. When I am in this state, by feet are not in pain unless I try to walk on them, but walking causes pain. When I am 'on', I can walk without pain in my feet. So, I was ASSUMING that my feet are also in dystonia. However, no curling under or pain unless I try to walk. ..wme > This is always (as opposed to sometimes) a sign that I need more > medication. It occurs either if my nighttime meds at 3:45AM are not > working, or if my meds during the day are > blocked by food, especially high-protein food, or if I am late in taking > a dose, so that my dopamine level dropped down too low.. It can last 10 > minutes to 2 hours. I'm beginning to agree with you, but the food thing really causes me problems. There is a history of hypoglycemia in our family, and if I don't eat I feel terribly weak. I HAVE to start the day with orange juice to even begin to walk. Funny thing though; if I start with OJ and exercise (which also raises blood sugar level), I can do without any meds for at least 2 hours. Then I have to eat and the food blocks the meds and I can get no on time until after lunch. ANY protein at all kill meds too. ..wme > If I am either too cold, underprotected from cool or cold air, or > overtired, dystonia is more likely. Also if my sugar level is too low. Same here, but I didn't know the blood sugar level affected it also. ..wme > With Sinemet CR being more slowly absorbed, it is not as effective in > stopping dystonia as regular Sinemet, which absorbs quickly. I use them > together. Regular Sinemet is like first gear and CR like a 3rd gear for > highway driving. > > What I am thinking is that the CR may have been paratially blocked, and > that your dystonia was NOT due to CR, but rather to protein or food > blockage. I hope you are right, and I am going to try the CR again, only this time try your schedule as much as possible. However, the CR I have is 50/200, and as far as I know, I can only break in two (25/100). Question: When do you eat and how do you avoid protein? It seems protein is in everything. Is there any difference between ANIMAL protein, and vegtable protein (ie beans and rice in combo)? ..wme > Maybe the CR never got a chance to work. > > Also, Walter, did you try it with or without regular Sinemet? Both ways. However, I have had too many variables to contend with. I had continued to exercise with light weights until recently, but now think that the weights were contributing to the arm pain. So I cut them out too. ..wme > If you take only regular Sinemet, you could crash off it, go into > dystonia due to low dopamine, and never have long on-periods. If the CR > was blocked, the low-dopamine dystonia would appear CONCOMITANTLY and you > could think that this was being caused by the CR that actually was > swallowed, but not getting into your system. Exactly. You don't know how many times I have complained to my wife, "if I only had a gague to tell me if I'm over or under medicated"! Another reason I think you are right, is when I took the CR the pain would usually start within 10 or 15 minutes. And from what you are saying, that is too soon for overmedication. > I take EXACTLY what you do, except that I take two more doses of my > Sinemet- Sinemet CR combo, at bedtime and at about 3:45. I do like your > overall medication pattern, except that there is nothing to get you > through the night. > > So the next step is for you to tell me about your use of CR. If you took > it with regular SInemet, it would either cause DYSKINESIA if there was > too much in your system from the two medications combined, or smooth, > longer on-periods, if it worked well. I tried only briefly with regular simemet, had a lot of pain so discontinued. I don't think I have ever had dyskinesia. ..wme > If it caused dystonia, I would be surprised. I just want to be sure that > it wasn't dystonia due to levodopa not getting through the blood-brain > barrier, not converting to dopamine there.This would be the more likely > cause of DYSTONIA. > > Do you think that the CR could have been taken without adequate > absorption? Did you take it 30 minutes BEFORE eating? Do you do that > NOW with the regular Sinemet? Not being absorbed is a very real possibility. I'm trying to allow 30 - 45 minutes before eating, and an hour after eating. ..wme > My schedule , not the best, but as good as I can manage, is > > Sinemet (3/4 or 1/2 of a 25/100): 6:45AM, 9:30, 12:15PM, 3:15, 6:15PM, > 9:15, 12:15AM > , 3:45 > Sinemet CR (3/4 or 1/2 of a 25/100 CR) same as regular Sinemet > Eldepryl (1/2 of 1 5mg tablet) 6:45 AM, 9:30 AM > Tasmar (1/2 of a 100 mg pill) 9:30AM, 12:15 PM, 6:15 PM, 12:15 AM > > Good wishes for a better day tomorrow. Look forward to hearing from you. > > God Bless > > Ivan :-) Thanks Ivan. Another question. How does Tasmar fit in? i.e. How would you adjust your schedule if you didn't have Tasmar? One BIG variable that I can't control is stress. Even small amounts of stress cause me to go off, and then I find myself asking, "is it the meds schedule or the stress"? Due to the length of this, I am not sending the previous notes. I am also changing the subject so my isp won't 'hide' the note from me. Walter PS I don't get to spend as much time as I would like to to keep up with this list, and am usually behind. If you copy me on [log in to unmask] I will find your reply a lot faster, as I get very few messages there.