(HINDSIGHT IS ALWAYS TOO LATE)
I went into my treatment program completely ignorant. I suffered many problems because of this ignorance. I had the misconception that because of the many years of experience available to them the neurologist would know what and how to proceed. I finally realized that years of experience really mean months of experience repeated many times. The doctors I saw depended on experimentation with little or no planning involved. After all, they didn't suffer any consequence.
My diagnosing neurologist was new just completing her education. My second neurologist did not specialize in motor disorder. My third was a motor disorder specialist, but didn't seem to understand the importance of communication. I think, with him, I was making some progress. The next two were changes made due to a location change with a resulting insurance change. Neither of these were specialist.
With the second neurologist, I tried several different medications, I guess depending on the recommendation of the particular drug rep that was feeding him. He finally gave up, realizing it was not as simple as he thought. He finally arranged for me to see the motor disorder specialist.
Enter Sinemet. This doctor seemed to use Sinemet exclusivly. My first prescription was for taking one half tablet of 25/100 three times a day. beginning with one half tablet, building up slowly over several weeks. Next prescription was for one tablet three times a day. Again buildup one half tablet at a time over several weeks. Next I went up to one and one half tablets, Then to two tablets three times a day. I started having dyskinesia problems with the two tablet protocol. I got dicouraged and tried to take myself off of the medication. I finally got acclimated to the protocol of two tablets three times a day. The instructions were, approximatly the same tme everyday at least an hour before a meal. I had been on the two tablet three times a day for about two months when I moved. The stated goal was to get to two tablets four times a day. At this time the dyskinesia was tolerable.
During my acclimation period, I ended up in the hospital thinking I was having a heart attack. I actually had a dyskinesia problem. The dyskinesia was effecting my diaphram.
Since my move to a new location, I have continued with my attempts at getting acclimated to Sinemet. I contnue to have ups and downs. Finally I decided to research the drug and my treatment. I decided to write a blog documenting my struggles with the treatment. I started my research on the internet in early December 2015. I discovered that the Sinemet had very definite characteristics of absorption time and half life in the body. The goal of taking the Sinemet was to supply levodopa as a precursor to dopamine to make sure the brain had sufficient dopamine for smooth operation. I found that falling levels or starvation of dopamine caused erratic operation of the brain cells. At first I missed the point that levodopa was not the bodies primary fuel for manufacturing dopamine. I had the mis-conception that ther body did not manufacture levodopa. I had thought the body had levodopa already and the Sinemet was supplementing the body's supply.
I decided to look at the level of levodopa in the blood based on the protocol of dose level and dose schedule throughout the day. Using geometry and a straight edge, I sketched out my concept of what the level of levodopa in the bloodstream would be during the day. I plotted the profile of the protocols I had been on. I then tried to correlate my periods of dyskinesia with the graphs I had drawn. This seemed to correlate with the falling levels of levodopa. It became obvious that the timing between doses was the most important part of designing your protocol. Taking the doctors prescribed schedule was inadequate. ( Take two tablets by mouth four times a day.)
The prescribed instructions, should be: Take two tablets four times a day at three hour intervals. The only way a person can do this is with some kind of dose timer. Using this technique, the doctor could make the necesary adjustments of dose level and timing to minimize the dyskinesia. For instance in my case, the doctor prescribed "TAKE TWO TABLETS BY MOUTH FOUR TIMES DAILY ". What I have found works best for me is: Two tablet doses taken at three hour intervals for a daily dose of 800 mg. I arrived at this by plotting the dose profile using my spreadsheet algorithm. I developed the algorithm using straight line approximations of the absorption time and half life characteristics of levodopa. Since then I have developed a mathematical model of the profile. A plot of this profiles is shown below.
As I stated earlier, it is necesary to use a timer to keep to the schedule. I bought a Dose-Alert timer which works well. I bought it on the internet from Walgreen. Either the pharmacist or doctor should provide a timer with the first prescription of Sinemet. If I were a doctor, I would make up a starter kit for introducing Sinemet to a patient. It would include a timer, the first month's supply of Sinemet tablets with detailed instructions of how to build up your dosage. A dose profile graph with a log to record your symptoms would be beneficial.
