No Sinemet Day 43 - Monday July 15, 2013
I have now completed 42 days with no Sinemet or Carb-Lev. My meds are:
1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1 in am, ˝ at night
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
5) Steroids (Methylpreonisolone)
6) Vicadin (never used this)
Once in the morning around 8 and again at night around 8. No on and off, no waiting for the meds to take effect. My Neuro said after a few days without Sinemet it was interesting. After almost two weeks it was still interesting. Now on July 11 he has decided it is remarkable. Here is his response:
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By way of explanation when I decided to quit the Sinemet I had done little research on possible side effects. I really did not understand the potential there was for negative withdrawal issues. And I did not have a plan to quit; it all just came together.
The week of May 27 I had a Neuro appointment. I was having so many negative issues and my life was fairly miserable. I was really considering DBS when I stumbled in this forum upon a post about how a woman had switched from Artane to Cogentin and her life changed (until she changed meds she could barely walk and after she was going dancing!). So the Neuro and I decided to switch from Artane (which I had reduced by 50% in the previous two weeks) to Cogentin (which I started the next day as I stopped the Artane).

Around this same time I was suffering from severe, almost intolerable back pain just before I stopped the Sinemet. It was weird because, while I have had occasional back pain from past injuries, the Flex and Ibu always did the trick. And the pain was at the base of my spine. It almost killed me to sit down from a standing position or stand up from a sitting position.

I went to the Chyropractor but the treatment didn't help. I had taken Flexerill and Ibuprofen for three days roughly before I gave in and went to my family dr., who did an x-ray and prescribed a steroid, Methylpreonisolone. I only took it for 5 days, starting at 3 pills twice daily then less each dose until I was on my last day with the final pill. But it sure worked! By day 4 the pain was totally gone.
So at this juncture I was taking Flexerill and Ibuprofen for my back. This had nothing to do with the Parkinson’s (or so I thought). I stopped Artane and immediately began the Cogentin, and began the steroid for my back. Lastly I started taking Prozac for my apathy.
Almost immediately I noticed that I felt better at that point than I had in a long time. For this reason I decided to skip a normally scheduled Sinemet (carb/lev one quarter of 10/100 every 30 minutes) and I realized I was not experiencing my “OFF” symptoms. The next day, as I realized I had cut my Sinemet by 50% and I felt good physically, I decided to stop Sinemet altogether until the symptoms returned. I checked in with my Neuro and waited for the symptoms to return. But they didn’t!
Below are the positives and negatives of where I am today.

Here are the positives:

Absolutely no tight muscles
No problem driving
Meds taken at 8 am and 8 pm
No ON/OFF time
No problem eating
No problem sleeping
95% of the time I walk normal and type normal
90% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight memory loss (getting a little more pronounced)
Possibly minor vision issues
Soft voice
Dry mouth
Some slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy.

On my next post I will try to put this experience into perspective by bringing it up to the present. ONE LAST THING: DO NOT TRY ANY OF THIS WITHOUT CHECKING IN WITH YOUR DOCTOR.