[Sasha]

My neurologist says he's never heard of this.

Here is the deal:I wake up slow and stiff but can walk ok; I take my Sinement 25/100 and Mirapex .5 and in about 20 minutes I moves pretty good - for about 2 -3 hours, then I get kind of slowed down and stiff and take my second dose - after 20 minutes of so, I just kind of freeze, can't move. Hurts to try to walk. This lasts for up to an hour, then I can walk and move normally for about 1or 2 hours - after which I repeat the cycle until bedtime.

I tryed to explain this to my doc who responded by cutting me back from 5 doses of meds a day to 4, which was not helpful.

Has anyone else had this bad reaction to their medications followed by okay respoonse an hour later? I would really appreciate any thoughts anyone has; this has chopped my day up so I'm almost housebound.

Thanks so much for your help.

Sasha

[paula_w]

It sounds like your second dose of meds didn't kick in before you went off. it's common, especially depending upon what you've eaten. It might have kicked in finally during that last hour.

[reverett123]

Sasha-
What happens if you don't eat breakfast?
rick

Originally Posted by Sasha

My neurologist says he's never heard of this.

Here is the deal:I wake up slow and stiff but can walk ok; I take my Sinement 25/100 and Mirapex .5 and in about 20 minutes I moves pretty good - for about 2 -3 hours, then I get kind of slowed down and stiff and take my second dose - after 20 minutes of so, I just kind of freeze, can't move. Hurts to try to walk. This lasts for up to an hour, then I can walk and move normally for about 1or 2 hours - after which I repeat the cycle until bedtime.

I tryed to explain this to my doc who responded by cutting me back from 5 doses of meds a day to 4, which was not helpful.

Has anyone else had this bad reaction to their medications followed by okay respoonse an hour later? I would really appreciate any thoughts anyone has; this has chopped my day up so I'm almost housebound.

Thanks so much for your help.

Sasha

[Sasha]

Originally Posted by paula_w

It sounds like your second dose of meds didn't kick in before you went off. it's common, especially depending upon what you've eaten. It might have kicked in finally during that last hour.

Thanks for the reply, Paula and Everett,

I have wondered if maybe I am simply going off but, if so, it is a much worse off than the one I wake up with, which puzzles me. And, after my first dose (before breakfast), I don't pay much attention to food....Big mistake? No one every told me to time this - would I wait an hour or so between food and medication?

Everett, I always eat breakfast, I get a headache otherwise. However, I wait until meds are at least starting to work before eating. What do you think?

Thank you all so much.

Sasha

[paula_w]

Originally Posted by Sasha

Thanks for the reply, Paula and Everett,

I have wondered if maybe I am simply going off but, if so, it is a much worse off than the one I wake up with, which puzzles me. And, after my first dose (before breakfast), I don't pay much attention to food....Big mistake? No one every told me to time this - would I wait an hour or so between food and medication?

Everett, I always eat breakfast, I get a headache otherwise. However, I wait until meds are at least starting to work before eating. What do you think?

Thank you all so much.

Sasha

Unfortunately, sinemet is a good on but a bad off. I didn't have cramping and dystonia until I was well into the disease and on sinemet. Watch your diet, i'd be willing to bet that is at least part of the problem. Protein and dairy are real med blockers for many of us. I eat fruit, cereal, or yogurt. The days of eggs benedict with bacon have been long gone. I have eggs and vegetables for dinner now, not breakfast.

I'd write it all down for at least a week if you can. This is something that can be managed if you figure out your own food/med regimen. As for the worse off, that could be dystonia or it could mean that your med isn't working and you are even lower in dopamine that when you woke up. That means other chemicals are off too.

I'm wondering why your doctor didn't at least consider this a possibility. it doesn't sound like less sinemet will change anything but i could be wrong and please let us know.

good luck

[reverett123]

Try fasting or nibbling lettuce or anything that doesn't raise your glucose enough to trigger insulin release. If you do noticeably better I'll tell you what I can. Not being mysterious, it is just rather complicated.

Originally Posted by Sasha

Thanks for the reply, Paula and Everett,

I have wondered if maybe I am simply going off but, if so, it is a much worse off than the one I wake up with, which puzzles me. And, after my first dose (before breakfast), I don't pay much attention to food....Big mistake? No one every told me to time this - would I wait an hour or so between food and medication?

Everett, I always eat breakfast, I get a headache otherwise. However, I wait until meds are at least starting to work before eating. What do you think?

Thank you all so much.

Sasha

[reverett123]

Reread your post-
You wake up slow and stiff like a good parkie, take meds, they start working, you have breakfast (carbs?)

Thirty minutes later you can't move. Tell me if any of these apply-
Taking extra doesn't do a thing.
Your arms and legs are useless but weak, not rigid.
Somewhere along the line your bladder gets very active.
When things start to work again they come online fast, say 10 minutes.
The routine is predictable.

Any of that true?
<Poirot turns and gazes out the window with hands folded behind him and little grey cells a-wiggle>

[Conductor71]

Originally Posted by Sasha

Thanks for the reply, Paula and Everett,

I have wondered if maybe I am simply going off but, if so, it is a much worse off than the one I wake up with, which puzzles me. And, after my first dose (before breakfast), I don't pay much attention to food....Big mistake? No one every told me to time this - would I wait an hour or so between food and medication?

Sasha

Sasha,

The longer we are on l-dopa therapy, the more likely we are too experience a med related effect called the "super off". It can happen at the beginning phase of a dose and is characterized by our motor symptoms being much worse than they usually are at baseline or a normal wearing off period. It is mentioned in many medical texts on PD. According to the Handbook of Parkinson's Disease (vol. 92)
It can last from a few minutes to hours. It sounds like you might be experiencing this.

[stevem53]

I had to move up to Stalevo, and for some its a blessing, and for others it is a curse, and for me its both, but its the only thing that works

I have to take 200 mg doses, otherwise it is a joke..All I get is dyskinesia and dystonia if I take any less

My experience and my belief is that after a few years on Sinemet, when we begin to have off periods, something happens in the body where we cant live with or without Sinemet, and Ive noticed that small changes in my med regimen makes big differences

A few weeks ago I had an off period in the middle of the day, so instead of taking another Stalevo, I took a generic Sinemet 25/100, thinking it would fill in the gap, and I got a cramp in my calf that drove me half insane

The past two weeks Ive been taking a dose of mucuna powder when I go out fishing to get a dopamine boost so that I can go out and do what I have to do, and during the past couple of days, I havent taken any, and Ive been getting periods of dyskinesia during the afternoon, where as I was only getting dyskinetic when my meds were wearing off at night for the day..I take a valium to take the edge off of my off time at night..I refuse to take four doses of Stalevo per day..Cant afford it anyway..I hit the doughnut hole last month

Also, as Paula and Everett mentioned, food makes a difference for some of us..For me, protein works the opposite..My meds kick in quicker if I eat something with protein in it..I have also found however, that if I eat pasta, and hour before, or a half an hour after meds, sometimes they dont kick in at all

I take 3 x 200 mg Stalevos per day, and if I dont take the three hours apart, I have off periods inbetween..I end up with 10 -11 hours of on time per day

Dont know if this helps much, because finding balance is like trying to crack a code

[Sasha]

Poirot:
Reread your post-
You wake up slow and stiff like a good parkie, take meds, they start working, you have breakfast (carbs?)

This is true - but I do better with protein, and, after breakfast I'm on for about 3 hours.
The next describes my reaction to subsequent doses:

Thirty minutes later you can't move. Tell me if any of these apply-
Taking extra doesn't do a thing.
Your arms and legs are useless but weak, not rigid. (no, legs are rigid)Somewhere along the line your bladder gets very active.
When things start to work again they come online fast, say 10 minutes.
The routine is predictable.

True - this describes me, Everett, except that the first dose doesn't do that.Later doses do.

Conductor, "superoff" sounds like a good name for it. Thank you for the concept! (I ordered the book, too - $22 on Amazon.)

Steve - my physical therapist - who specializes in neurological cases - told me she throught I would be helped by Stalevo. Thanks for sharing your day with me. Where do you get mucuna?

I think your suggestion of keeping a food/med journal is excellent, Paula. As for my doc, I think he is of the "less medication is more benefical in the long run" school of thought and so wants me to cut back if I possibly can...but is is strange that he didn't address the on-off situation. Maybe he thinks too much Sinemet is the cause....and ultimately it sounds like it might be.

Thanks, everybody, for all the great input. I knew you would know more than my doc, and you do!

Sasha