Increasing Dystonia in the hands as well as the feet now.

[jcitron]

I've been doing pretty well for the past 6 months, and last Monday I saw my neuro due to some complications with Klonipin and a check up. We went through the usual tap the foot, stand up with the arms crossed tests, and then she asked me to move my hands. My right hand was actually better than my left hand this time. The fingers moved nicely as I tapped quickly between the thumb and each finger. This is also a piano playing finger independence exercise so I wonder if this helps because I do it daily to keep my fingers mobile.

My left hand was downright sore like I had been squeezed in a press. The fingers stayed clenched and I was in great pain as I moved my fingers slowly apart. I even had trouble grabbing anything or even holding the steering wheel on my way to the appointment. For the next few days, the hand continued to clench tightly to a point I had bruises on the palm. By Sunday this week, the hand had calmed down and everything was back to normal. I couldn't even play the piano during that tight period.

Well I thought everyone was happy, but yesterday I had the same thing happen again. This was while I was playing my clavichord. I was playing something with an Alberti bass pattern - pinky-thumb, middle-finger thumb (5-1; 3-1), repeated over and over for measures on end at a quick tempo. This is used by Mozart and Haydn a lot in case you're wondering. This time my fingers got slower and slower, tighter and tighter to a point where I had to stop because of the pain in the hand. Interesting though. If this was tension, there would have been pain in my arm but there was none there; just in the hand its self. The hand immediately clenched up and was stiff for the rest of the day.

Now this is interesting... I had only one dose of Sinemet in me at this point, and I was at more than mid-point in my dose. Over the course of the day, the hand got better, and by last night I played the piano quite normally. This morning, I woke up with my right hand clenching this time, and it has made it difficult to type and drive. After my second dose of Sinemet - 11:00 am, my right hand came back to normal.

All the while this clenching is taking place, my bicep muscles are extremely sore. I have even looked at them to see if I bruised something. They feel like I walked into a doorway, or someone noogied me with their knuckles. These tend to calm down after the Sinemet dose but the pain is there all the time.

My feet are doing nasty things too again, and usually in the wee hours of the morning. My neuro has me taking a Parcopa, and that seems to kill the spasms pretty well but they leave me exhausted the rest of the day.

So what do ya'll think is going on?
More medication?
A change perhaps in my schedule again?
A change in medication?

It's a bit frustrating - like being kicked where it hurts most because I was doing so well for so long that I started to forget I had a problem.

John

[made it up]

Try to up your Sinemet dosage by just a bit and see how you go?
By taking only a bit more in your total daily dosage but less than you are in one dosage and more frequently it may help.
Also for a better sleep at night maybe a Sinemet slow release tablet at bedtime might get you through the night without the early morning dystonia.
Cheers,
Lee

[jcitron]

Originally Posted by made it up

Try to up your Sinemet dosage by just a bit and see how you go?
By taking only a bit more in your total daily dosage but less than you are in one dosage and more frequently it may help.
Also for a better sleep at night maybe a Sinemet slow release tablet at bedtime might get you through the night without the early morning dystonia.
Cheers,
Lee

Thank you for your thoughts, Lee. I am already taking a CR at night as well. I'll take your suggestion and try a smaller dose in between. Maybe even try a bit of a schedule change - like taking the CR later even closer to bedtime than I have been.

This is like a tight rope balancing act. You think you've got everything working like it's supposed to then something comes along to throw everything off kilter.

I'm afraid I'm not seeing the effiacy of the medication anymore and things are progressing fast than before.

John

[Curious]

any change in your diet john?

have you been eating more sweets than usual?

[jcitron]

Originally Posted by Curious

any change in your diet john?

have you been eating more sweets than usual?

Hi Curious,

Yes I have, come to think of it. Every time I get my medication refilled at CVS, I buy myself a box of malted milk balls.

I hope this isn't the case because I surely love these. This is my only addiction. I no longer drink coffee or any form of alcohol, and rarely eat anything else sweet other than these.

John

[Curious]

i suspected as much john. sheesh...and you didn't share with me.

i asked because one of our clients at the gym was experiencing the same thing.

when it finally came out, you people aren't real honest with their trainers , he had been eating a bag a chocolate chip cookies daily!

he was craving sweets and indulging. he knows to avoid the protien rich snacks around med time, but figured he wouldn't have a problem with the cookies.

we recommened taking the cinnamon supplements. they curb the sugar cravings and help support sugar metabolism. he has been getting fantastic results. back to going upstairs, which he hadn't done in years.

so, no you don't have to fully give up the malted milk balls, but they may be part of the problem. if you share..it might help.

[made it up]

Hi John,
Has the low animal protein diet been explained to you?
If not ask your neuro so you know it's not just me giving you an alternative health idea.
Plant protein is ok but try and lower your intake of meat and dairy products etc.
Also meds on an empty stomach work a lot faster plus by then giving it say 1/2 an hr to do its job that can make a difference to the length of your ons.
There's always DBS when things start to look a bit grim so hang in there!
Lee

[jcitron]

Originally Posted by made it up

Hi John,
Has the low animal protein diet been explained to you?
If not ask your neuro so you know it's not just me giving you an alternative health idea.
Plant protein is ok but try and lower your intake of meat and dairy products etc.
Also meds on an empty stomach work a lot faster plus by then giving it say 1/2 an hr to do its job that can make a difference to the length of your ons.
There's always DBS when things start to look a bit grim so hang in there!
Lee

Hi Lee,

I am aware of the low animial protein intake. I always try to take my medication at least 2 hours before I eat. I discovered this about a year ago on my own. When I would eat a breakfast first, I would feel really aweful when I took my medication because it wouldn't get absorbed. This was very frustrating at first, then I discovered that if I didn't eat anything first, the pills went in, and I was happier.

Recently, however I've started eating probably too much good stuff. Let's face it, we lose our sense of taste and smell. I know for sure mine is going, but lately I've been really hungry even though food really doesn't appeal to me. I noticed that if I eat things such as Italian sandwiches with the hot peppers and oil, I can actually taste them. This has become my bigger meal during the day while at work. At night I have a smaller meal, usually pork and chicken, and occasionally a small piece of steak from the grill. The chicken tastes like sawdust, and the pork is like cardboard. The beef has a little bit more flavor, but not much. I eat it because I have to; not because I want to.

My PCP noticed that I gained about 26 pounds from the previous visit about 8months ago. He and my neuro said that was a good thing because I was down to 123 lbs back in January. So needless to say, the nice Italian sandwiches every day at lunch are too much of a good thing along with ice cream for dessert at night. It looks like I'll have to cut back on this along with my malted milk balls.

I don't think I'm ready for a DBS yet. I want to keep trying at the medication level first. I don't have much of a tremor, but I am more spastic, stiff, and getting slower.

John

[jcitron]

Originally Posted by Curious

i suspected as much john. sheesh...and you didn't share with me.

i asked because one of our clients at the gym was experiencing the same thing.

when it finally came out, you people aren't real honest with their trainers , he had been eating a bag a chocolate chip cookies daily!

he was craving sweets and indulging. he knows to avoid the protien rich snacks around med time, but figured he wouldn't have a problem with the cookies.

we recommened taking the cinnamon supplements. they curb the sugar cravings and help support sugar metabolism. he has been getting fantastic results. back to going upstairs, which he hadn't done in years.

so, no you don't have to fully give up the malted milk balls, but they may be part of the problem. if you share..it might help.

Very interesting... I promise I'll share my malted milk balls.
I was good this week, I went in to renew a prescript, and I walked right by them without touching them. I had an urge for them, but I didn't want to spend the 2 bucks on a box. I guess I was doing myself a favor after all. I'll let my temptation die down a bit and see what happens although I can taste them while thinking about them. They're more sweet to me now than having any real flavor like they used to, but they're still good anyway.

Thanks again for the heads-up on this.

John