JCitron
09-22-2007, 10:37 PM
This has been the worsed I've felt in a very long time.
My original Sinemet schedule was 4-1/2 25/100 pills per day along with Amantadine 3x per day. I took the 1/2 just before bedtime, and I was able to sleep through the night. This had worked for about a year without any problems. Then about a month ago, I started waking up in the early morning hours, like 2:30 - 3:00 with either cramps in my feet, and/or twitching limbs with my feet and legs doing most of the moving.
When I got up in the morning, I was not only exhausted, but also very stiff, had a definte tremor in my right hand, and plain felt aweful. I would then take my first dose, and it wouldn't help at all. In fact it actually made me sick to my stomach. I even tried eating something with it, but that made things worse. At one point I actually felt like I was going to pass out. I got hot and sweaty, and had to put my head down on my desk at work. I got to a point where I dreaded taking the medication. By the time I took my second dose, or sometime the third dose, I was feeling better, and could then push my way through the day.
This has also affected my piano playing. I can't move my hands and arms the way I could before, and my fingers get confused. If I'm playing something that requires the index finger (finger 2), my ring finger (finger 4) will move instead. I also can't get my hands to play together evenly, and I stop sometimes in the middle of complicated passages because I get brain/hand freezes. I had a long trill stop in my right hand. The fingers got slower and slower and it came to a stop!
The other thing that changed is my bladder and my sense of taste. Geez, I hate to be blunt, but I feel like I need to go every half hour! I realize this so I hold it for a couple of hours at least. The night times are rough though, and I end up using the jug rather than trying to run for the bathroom because I have very low blood pressure (106 over 53 on last reading) and I've fallen a couple of times. I almost split my head on the threshold after the last fall!
As I said above, I've lost my sense of taste, or it's dulled. Bannanas taste horrid. I used to love 'em, but I can't stomach them now. They're a tasteless mass. This is true for a lot of food now, so I find myself eating just because I have to; not because I want to. This has also caused a massive weight loss. I went from a skinny 146 lbs. down to puny 128 lbs.
So Thursday (Sept 20th) was my neuro appointment. I've seen her enough now so she could tell I was feeling aweful. She had me try to get out of the chair with my arms folded, and I couldn't even move. She then tested my balance, which showed that I tend to fall backwards still, and she had me walk to observe my gait. My tremor was active in my right hand, and I was stiff because my dosages weren't working well.
We talked a little bit about it, and she decided to increase my Sinemet to 6-1/2 pills per day, but leave the Amantadine the same. I see her in 3 months to discuss how this is working. If it's not working, she said she'll try Comtan or Selegine. Since I've just started the routine on Sept. 21, I feel a little better today. I didn't even have any nausea when taking the first dose. The piano playing hasn't gotten better so hopefully that will return soon.
John
My original Sinemet schedule was 4-1/2 25/100 pills per day along with Amantadine 3x per day. I took the 1/2 just before bedtime, and I was able to sleep through the night. This had worked for about a year without any problems. Then about a month ago, I started waking up in the early morning hours, like 2:30 - 3:00 with either cramps in my feet, and/or twitching limbs with my feet and legs doing most of the moving.
When I got up in the morning, I was not only exhausted, but also very stiff, had a definte tremor in my right hand, and plain felt aweful. I would then take my first dose, and it wouldn't help at all. In fact it actually made me sick to my stomach. I even tried eating something with it, but that made things worse. At one point I actually felt like I was going to pass out. I got hot and sweaty, and had to put my head down on my desk at work. I got to a point where I dreaded taking the medication. By the time I took my second dose, or sometime the third dose, I was feeling better, and could then push my way through the day.
This has also affected my piano playing. I can't move my hands and arms the way I could before, and my fingers get confused. If I'm playing something that requires the index finger (finger 2), my ring finger (finger 4) will move instead. I also can't get my hands to play together evenly, and I stop sometimes in the middle of complicated passages because I get brain/hand freezes. I had a long trill stop in my right hand. The fingers got slower and slower and it came to a stop!
The other thing that changed is my bladder and my sense of taste. Geez, I hate to be blunt, but I feel like I need to go every half hour! I realize this so I hold it for a couple of hours at least. The night times are rough though, and I end up using the jug rather than trying to run for the bathroom because I have very low blood pressure (106 over 53 on last reading) and I've fallen a couple of times. I almost split my head on the threshold after the last fall!
As I said above, I've lost my sense of taste, or it's dulled. Bannanas taste horrid. I used to love 'em, but I can't stomach them now. They're a tasteless mass. This is true for a lot of food now, so I find myself eating just because I have to; not because I want to. This has also caused a massive weight loss. I went from a skinny 146 lbs. down to puny 128 lbs.
So Thursday (Sept 20th) was my neuro appointment. I've seen her enough now so she could tell I was feeling aweful. She had me try to get out of the chair with my arms folded, and I couldn't even move. She then tested my balance, which showed that I tend to fall backwards still, and she had me walk to observe my gait. My tremor was active in my right hand, and I was stiff because my dosages weren't working well.
We talked a little bit about it, and she decided to increase my Sinemet to 6-1/2 pills per day, but leave the Amantadine the same. I see her in 3 months to discuss how this is working. If it's not working, she said she'll try Comtan or Selegine. Since I've just started the routine on Sept. 21, I feel a little better today. I didn't even have any nausea when taking the first dose. The piano playing hasn't gotten better so hopefully that will return soon.
John