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Hello listmembers, It is time to give an update of my adventures with Parkinson after all the talking about di-phasic dyskinesia some time ago. I suffered very much from wearing off symptoms ;a combination of dystonia and dyskinesia . I had tried to take a little more levadopa, but the effect was I had top of meds dyskinesia next to the symptoms mentioned above. Taking less sinemet did not bring about a decrease of wearing off misery either. My neurologist said I had a good indication for pallidotomy. So I just had to hang on some time. I had a consult at Amsterdam University Hospital and to my relief the neuro-surgeon did see an indication as well. I was afraid he would not, because I gave a show of the most heaviest symptoms they ever saw, so I thought. I had managed with my meds to be in a state in which a neurological examination was possible at the appointed time. However having to wait for 45 min. destroyed all my planning, but it did not destroy the indication. I am now waiting for the next step in the procedure. However, it is not going fast and I did not like to have to stand life for some months the way it was. The symptoms used so much energy that I could not keep my weight on the existing level. About 6 weeks ago I was reading through the stuff on dyskinesia and found this text on internet. QUOTE [Occasional patients experience severe choreodystonic dyskinesias with a diphasic pattern, this can be very difficult to treat effectively. The initial descriptions of this clinical pattern[124] documented the failure of carbidopa-levodopa dosages administered at short intervals around the clock to effectively treat this problem. Although several carbidopa-levodopa doses at short intervals can successfully defer the end-of-dose dyskinetic period, this strategy fails after approximately four to five overlapping doses.[124] At this point, patients typically begin to experience a sense of drug intoxication and, furthermore, note a decreasing threshold for dyskinesias with an inability to suppress them, despite even larger doses of carbidopa-levodopa. For the diphasic dyskinesia pattern to become obvious, the levodopa dose must be adequate; too low a dose will simply result in dyskinesias, whereas a higher dose allows the full pattern to develop[124] The usual dosages of carbidopa-levodopa used to treat conventional parkinsonian motor problems are adequate for demonstration of the diphasic dyskinesia pattern (ie, 100 to 250 mg of levodopa). Typically, it is the end-of-dose dyskinetic period rather than the initial dyskinetic phase that is the more troublesome and sustained. It tends to occur at a fairly well-defined portion of the levodopa response cycle, usually 2 to 8 hours after a single dose of carbidopa-levodopa. One treatment strategy is to overlap four to five doses of carbidopa-levodopa at intervals that are just long enough to preclude the development of the dyskinetic phase at the end of each dosage cycle[124] After the last dose, however, patients will cycle through the dyskinetic phase but at a relatively predictable time. Thus, they can arrange to be at home-and perhaps self administer a mild, short-acting tranquilizer such as alprazolam--during the time the dyskinetic period is expected. Once they have cycled through this dyskinetic period, patients typically experience adequate control of their parkinsonian motor symptoms for the remainder of the day, although control is not quite as good as during the time of peak levodopa response. This control typically continues overnight and into the next morning. If left untreated, patients usually start to experience increasing motor manifestations of parkinsonism by mid to late morning, at which time they can again restart their levodopa cycle, taking four to five overlapping doses. Thus, with this strategy patients can attain good control of their parkinsonian symptoms for several midday hours and adequate control during other portions of the day, once they have cycled through their last dyskinetic period] END OF QUOTE In short the author says one can exchange four or five periods of dyskinesia for one period of dyskinesia and some hours with Parkinson symptoms. This is really in conflict with the idea the levadopa should be divided as equally as possible over 24 hours or at least over 16 waking hours. I always believed that was beyond doubt. However I had some experience that could support the other point of view. I have the wearing off symptoms from the start of medication. The first years I felt the dyskinesia as an urge to move. It was possible to resist that urge , but to do so I did need willpower and could not really give attention to other things. Even at that time this was a very annoying symptom. If for some special day I had a reason for wanting more control, I could take a lower than normal dose the day before and struggle myself through that day. The next day I took more meds than normal and all was fine. But keeping the meds for yet another day on the high level gave much dyskinesia. This shows the dyskinesia is caused by a stapling up effect and not only by the immediately preceding meds. I remember David Langridge told the same story. He too felt that for him to divide the sinemet as much as possible was just not the best thing to do. QUOTE DAVID [How does all this tie up with the theory expounded so admirably by Brian Collins that the therapeutic window narrows with progress of the disease. I don't regard myself as far progressed in pd yet as soon as I started on Sinemet I began to experience the overdose effects albeit not during the"on" and this indicates to me that problems with sinemet do not always arise just through narrowing of the therapeutic window due to progression of the disease.] So I gave it a try. I did not take more sinemet than I used to ; 3 x 25/100 CR and started the day with a few hours without l-dopa, and so without the ability to be active. I take the first at 11.00, the next at 2.30 and the last at 6.00 in the evening. Even the wearing of effect which I expected to start somewhere between 9 and 10 at night is futile comparing to what I had to endure before. I could not immediately believe this could hold for long. But now after 6 weeks it holds!! It really makes for me and for Andre an important difference in our quality of life. We now can await the pallidotomy with less stress. Ida Kamphuis, 53/12+ Holland