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Old 03-22-2007, 05:33 PM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default Mine are a little different of course

This is a very good question, by the way.

My experience of "off" is not what I would have expected before they showed up about two years ago. They are quite unpleasent and include a cognitive component. I'm going to go into some detail and see which parts ge a "me too" response.

I'm on a two hour schedule taking one Sinemet CR 25/100 and one 4 mg Requip each time. First dose is about 7:00 AM and last is 7:00 PM. Normally this keeps me at 100% function from about 8:00 AM to around midnight, at which time I am thoroughly "off". The switch happens over a 15 to 30 minute period.

As I go off the cognitive portion is a sensation of receding - like a tunnel vision feeling. There is a distance between me and the world that wasn't there half an hour before. Keep in mind that it has been five hours since my last dose.

My arms are leaden and it becomes almost impossible to type. I can stand relatively easily but taking my first few steps is incredibly difficult and frustrating. Once I begin walking it is easier to continue. But a doorway or a turn means starting all over. I have never fallen but balance is an issue.

There is a GI component in that bloating is usually present. Also there is a bladder component in that often I have to go to the bathroom on short notice. Talk about stress...

There is a feeling of weakness in my lower legs which contributes to the balance issue. Once I get to the bed and collapse into it, a feeling of great relief washes over.

If I have to get up in the night the situation has changed little UNLESS it is after about 3:00 AM. After that things have improved greatly. I know that the conventional wisdom says that we make our dopamine in the wee hours, but I think there is a lot more to it. I suspect there is a circadian rhythm component that increases the sensitivity of our receptors at that hour.

When I get up around 6:00 to 7:00 AM, I am at 50% function and about ten times what I was when I hit the bed. At this point it has been about 12 hours since my meds. As I make coffee I almost always get dystonia of my left foot and it always lasts ten minutes regardless of meds.

About 30 to 60 minutes after taking my first round of the day, the butterfly starts to tear at his cocoon and -Presto!- I emerge into an "on" state.

Regarding the cognitive component- those of you who NEED coffee in the morning? Multiply the feeling by five to ten.

Sorry to go on so but it is a good chance to talk about something we haven't covered before.
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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