ramona
10-26-2006, 11:51 PM
I was recently diagnosed with Generalized Dystonia, but that type is quite rare as adult onset, which is what mine is. I tried Artane and it had no effect. Then I was put on a trial of levodopa (Stalevo) and it had a dramatic effect. It was such a huge relief, after having gone for a long time and trying a whole lot of different meds before I actually got a diagnosis.
However, now the question is - is this PD or dopamine responsive dystonia? They have many similarities and it may just be time that makes the determination. Here are my main symptoms, although they have progressed to this point in a rather unusual way from what I understand:
(When I am not on Stalevo)
Leg stiffness, trouble walking - muscles are very tense or rigid, making it hard for me to walk
Continual muscle spasms and jerks - my hands pull in, thumbs tuck in, feet curl under or upwards, head bobs up and down, muscles spasm in many parts of my body, including face, neck, jaw, tongue
eye movements - eyes will not stay focused on one place for more than a second or two, eyelids blink continually, also
Tremors - worse in right hand than left, exacerbated by repetitive action (scraping wallpaper caused weeks of problems)
The first time I took a dose of Stalevo, all of these symptoms stopped within 15 minutes, but returned 3 hours later. I have spent the last few weeks working on learning how to use Stalevo to get the most benefit out of it and this is what I have found:
At a dosage of 100mg, it will last 3-4 hours, depending on a number of factors. Then, it stops working as quickly as it starts - like a switch was flipped. I must take it on an empty stomach or it will hardly work at all. The bigger the meal I eat afterwards, the less it works. Stress, noise and other factors can counteract it's effects. It does not seem to work as fully now as it did in the beginning, although I have doubled my dosage (gone from 50mg to 100mg per dose). This could just be me learning more about it, though.
Does any of this sound familiar, particularly how my body reacts to the levodopa?
Wow, the switch was just flipped again. There goes my head, just like that, and the legs, too. :rolleyes:
Blessings
Ramona
Edited to add: I am 44 years old, with various other health conditions (hypertension, diabetes, hypothyroidism, GERD, ya da, ya da, ya da... Have had various undiagnosed neuro problems over the last 5-10 years)
However, now the question is - is this PD or dopamine responsive dystonia? They have many similarities and it may just be time that makes the determination. Here are my main symptoms, although they have progressed to this point in a rather unusual way from what I understand:
(When I am not on Stalevo)
Leg stiffness, trouble walking - muscles are very tense or rigid, making it hard for me to walk
Continual muscle spasms and jerks - my hands pull in, thumbs tuck in, feet curl under or upwards, head bobs up and down, muscles spasm in many parts of my body, including face, neck, jaw, tongue
eye movements - eyes will not stay focused on one place for more than a second or two, eyelids blink continually, also
Tremors - worse in right hand than left, exacerbated by repetitive action (scraping wallpaper caused weeks of problems)
The first time I took a dose of Stalevo, all of these symptoms stopped within 15 minutes, but returned 3 hours later. I have spent the last few weeks working on learning how to use Stalevo to get the most benefit out of it and this is what I have found:
At a dosage of 100mg, it will last 3-4 hours, depending on a number of factors. Then, it stops working as quickly as it starts - like a switch was flipped. I must take it on an empty stomach or it will hardly work at all. The bigger the meal I eat afterwards, the less it works. Stress, noise and other factors can counteract it's effects. It does not seem to work as fully now as it did in the beginning, although I have doubled my dosage (gone from 50mg to 100mg per dose). This could just be me learning more about it, though.
Does any of this sound familiar, particularly how my body reacts to the levodopa?
Wow, the switch was just flipped again. There goes my head, just like that, and the legs, too. :rolleyes:
Blessings
Ramona
Edited to add: I am 44 years old, with various other health conditions (hypertension, diabetes, hypothyroidism, GERD, ya da, ya da, ya da... Have had various undiagnosed neuro problems over the last 5-10 years)