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Originally Posted by i_got_it_2
happy 4th of july!
My story as of june 1, 2013 is this: I was taking sinemet/carb/lev 10/100 6 to 7 pills daily. I had tried several variations of this like adding comtan, changing to stalevo, etc. With little change. I had my annual appointment in late may with my neuro and we decided to change from artane to cogentin. I had fully stopped the artane without a substitute earlier in the year to try to identify why my symptoms were so pronounced compared to just a few years ago. My body wanted no part of quitting the artane and i ended up taking it again in late march 2013.
I should state at this point my symptoms in order of importance:
1) muscle tightness-this resulted in difficulty walking, eating, working; almost everything! I was reaching the point of going for dbs, for which i was approved for already. I literally did not want to leave the house for fear of what rebellion my body might present, or have a period of "off" time.
2) apathy-i used to run several businesses i started without difficulty. Now i can't even open my mail. I have months of unopened mail in different piles of priority just waiting for my attention.
3) unintended leg and arm movements-if i am watching a fight on tv i unconsciously "act out" what i see on tv. If that's not bad enough my other arm and leg join in the fun. I end up sitting on my hand to stop it!
4) morning prep-shaving and showering and towel dry are very difficult if i don't go immediately when i turn "on".
5) left side of body vs right side of body-my right side needs more help than my left side but once i turn "on", one has too much and the other too little.
I went to my neuro in may and he gave me my prescription for cogentin so i stopped the artane one day and started the cogentin the next day.
Around this same time i woke up with a sore (very sore) back. I went to my chiropractor but he was no help. So i started taking my historical mainstay of flexerill and motrin. I went to my family doctor and was given a steroid pill, identified earlier in this post.
It is now the 1st few days of june. I am taking the meds identified above when i notice i forgot my half hour sinemet/carb/lev dosage. But i also notice i feel...good! So it occurred to me to skip several pills, which i did. I was up the next morning and i felt great! Thus began a major shift in my meds: No sinemet/carb/lev. I checked in with my neuro and here we are some 30 days later! With no sinemet/carb/lev!
Here are the positives:
Absolutely no tight muscles
no problem driving
no on/off time
no problem eating
no problem sleeping
95% of the time i walk normal type normal
90% of the time no shaking of the hand/foot
here are the negatives:
Drowsiness
slight memory loss (i don't forget facts, i just forget why i came to the kitchen
possibly minor vision issues
so then, these are the facts. The last sinemet/carb/lev i took was on june 3, 2013. I feel great! Every day i wonder if this will be the last day of freedom. I wonder if the relief is short-lived. But in my first days i was so happy to be liberated from muscle tightness, had it of ended there i would have been so thankful.
Anyway, here it is. Do with it as you will. But if it's as simple as adding ibuprofen and flexerill....
Consult your doctor. Always.
Jim
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DAY 33 - NO SINEMET
It has been 33 days since stopping the Sinemet/Carb-Lev. I forgot yesterday to list dry mouth as a negative to the pills. But again, overall I feel great!
As an example, I bought a car several months ago. My right foot was doing things on its own. I wanted to accelerate but my foot would go fast then slow then fast. It was terribly annoying and embarrassing. In addition all that fidgeting eventually knocks the rubber cover off the break pedal. So I drive my new car with the rubber off.
Another driving example is my right arm. If I am too much "on", I have strength to drive but too much in my right arm. So I grip the steering wheel too hard until I can't grip it any longer, then I switch and try to put my hand under my thy or gripping the arm rest or my other arm. When I am "off" I can barely turn the power steering wheel!
Both of these symptoms disappeared on June 3 as I wrote to my Neuro:
Quote:
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The first day (Tuesday) was no Carb/Lev (actual last dosage was Monday evening at about 7 pm). Tuesday results were impressive: I could use my right hand to shave, type, button buttons, pull up my pants, etc. No hand shaking, trembling or tight muscles. Walking was normal and with arm swing. I could even hunch up my right shoulder which I couldn't do in your office!
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The only returning symptoms from before June 3, 2013 is a very slight tremor In my right hand which exacerbates when I am nervous, and slight issue with walking normal. That is to say sometimes I have to think about how to walk.
That's all until tomorrow!
Jim