It was 11 years ago today that the tremor came over me. Still just taking Sinemet, or sometimes Levo/Carb, as it's called here in Canada. The last few months have been a living hell of unpredictable offs and freezeups, horrible dyskenesias, balled up feet, falling, pinched sciatic nerve so that I can usually only walk with crutches, or sometimes crawl. Tried Mirapex, but that made it all much worse. I have finally stumbled on a drug routine that has so far relieved the torment:

1x 100/25 Levo/ Carb plus

1/2 x100/25 Sinemet CR

Swallowed without chewing, every 2 hours. I try to skip the hellish evening freezeup by sleeping it off, but if I wake up and need to turn over before the ~5 hours is up, and I can move again, I have to call for help. This combination seems just magical so far.

Best Wishes to you all

Actually, it seems to be working out to intervals of 2 hours and 45 minutes between doses today, at least my internal alarm that usually goes off at two hours (on chewed up CR) is running consistently 45min. late, so the 50mg of CR is extending it by at least that much so far. I don't take it at night.

I'm still not clear on how the stomach and small intestine stuff works, like how much water to drink with the pills? What triggers the stomach to dump into the small intestine? Does it have to be water, or will any liquid do?

Water is the best choice because its low nutrient value and thin viscosity get it to the head of the line. The meds have to get into the small intestine because the stomach is not set up for absorption. There are not many things that speed it up but ginger is one. Watch your doseing though. Too much will trigger Dk as well.

As for the other troubles, I was dealing with most of those a year ago but they are almost a non-factor now. Reduced by 90% or more. The possible reasons:
1) I dropped requip and am only taking sinamet.
2) I am taking large doses of the latter and trying to get just below the Dk threshold. Currently I am taking two CR 200/50 tabs 6x daily at three hour intervals (2400 mg) and still whittling it down (in fact I dropped it another 200 mg today and am waiting to see how it does.)
3) I am taking a ;ot of potassium gluconate. Four tabs of 550 mg each 3x per day. Get your GP to check your electrolytes about every 90 days to be sure you aren't building up dangerous levels, but my GP says that so long as my kidneys are doing their thing that any excess potassium will be purged. I think that this alone has worked wonders for my freezing and cramping. In fact, I had gotten a little cocky the last three days and had taken only a third as much potassium. Had my first cramping in two weeks!

Hello Namaste,
I have have had PD for 11 years also. I had doing ok on two tabs of Sinemet 25/100 (manufactured by BMS). My pharma changed me to pills mfg. by Merck and theyare not very effective. My neuro has added Mirapex. I have not been on the mirapex and Sinemet long egough to see if it helps me. I have also been expermenting with sinemet cr(mfg.BMS) at night and feel much better at night when I have to get up. Who is the manufacture of your Sinemet IR and CR. The generic drug makers have different formulas and some work better than others. Tanks for sharing your info.
Geraldo.

That's EXACTLY where I am at, 8 years in. The last 6 months, getting worse, free-fall. Wild fluctuations; often immobile for half the day and half the night; full body tremors, unable to lift a blanket, feet contorted and blistered, severe torment of freeze-ups; difficulty swallowing; dark thoughts... tra la la la.. you all know the song, but I still can't figure out if I am over-dosing or under-dosing. I try different times; schedule thrown off when cannot sleep. Not complaining here, just saying I hear the same story so often, it makes me wonder. The cheap generic sinemet for instance... does not seem to be effective, or is it just where I am on the Bell curve and this is normal rejection of the drugs after the honeymoon is ended?
Weirdest of all: since this thing started 6 months ago, the worst symptoms, by far, come within minutes AFTER I swallow any or all of sinemet, Mirapex and seligelene.

When you say "doing ok on two tabs of Sinemet 25/100" is that two tabs/day, or two tabs at a time several times a day? If it's just 200mg /day, wow, you're doing really good!

The generics I just got appear to have been made by "Tev", and Sun Sadup.
My new found success went haywire on me the second day, with horrible dyskenesia. Back to the drawing board!

remember that protein interferes with l-dopa absorption in the small intestine. i always take my morning meds, 1/2 of a teva 25/250 and 1/2 of 50/200ER on an empty stomach and almost always get predictable results in about 30min.
keep in mind very little l-dopa gets past the blood brain barrier, i've read may 1%., the rest is broken down before it gets to your brain.

http://www.benthamscience.com/ccp/op...-3/0006CCP.pdf

P.S. My new found success didn't last. Developed horrible full-body dyskenesia
in the evening. Exhausting. So today I'm trying 1x100/25 CR whole, plus 1/2x 100/25 fast release (had to chew it up, because I went horribly off ), and I'm down to 2 1/2 hour intervals (started optomistically at 3 hours)
A strange thing: the earlier I stop the drug for the day, the better I feel in the morning, the less desperate to take that first pill, and the less frozen up. Go figure.

So comforting to have company in this nightmare!

[QUOTE=Atma Namaste;
So comforting to have company in this nightmare![/QUOTE]

That is so true.
As I bounce around, on and off, I try to judge to what extent emotional events or creative binges cause the extreme ups and downs - the brain cranking out its own supply of dopamine, confusing the drug intake, but I have not identified a cause-effect thing. It's like a world gone random.
That would be a good name for a heavy metal band. World Gone Random.

Namaste,
SORRY I ment 2 tabs of sinemit every 2 1/2 hours. I took the Teva brand seneral years ago and it did not work for me either.