Steve, you sure have struck a nerve here!! I think that we all have a tendency to overmedicate ourselves in attempt to get moving and keep up with life. In 2007, I was taking 15-18 25/100 to get through the day, 2 every 2 hrs. Terrible dyskinesia, unbearable offs in between. And when I tried to let the sinemet wear off and then trying to get back on, ugh! Stalevo, Comtan, Requip and all the other agonists/inhibitors, no luck. Because you have to lower your sinemet in conjunction with their "boost". All said, I had DBS in 2007 and just recently (this week) had my batteries replaced-now am on 5-8 25/100 per day. DBS will work best if you have a tremor. Not the best if your primary symptoms (of which yours sound close to mine) are balance, gait, rigidity. I did get a lot of relief from the dyskinesia's, when I get them they aren't near as bad.
Don't get me wrong here, I think that DBS would be very good for you. Just want you to be aware your symptoms aren't going to be relieved like the videos you see. I have not found one article or video showing someone who does NOT have a tremor and primarily balance/stiffness/gait issues largely benefiting from DBS.

Sum it up- wean off all the others except sinemet, take as little as possible. You know your window so if it lasts 2-3 hrs then take it as such. I use an alarm and my phone to keep regular on my meds. Maybe take CR at night to help in the morning. Look into DBS. The other agonists/COMT etc require you to tailor your sinemet to their effect, it was just too inconsistent for me. HANG IN THERE MAN!

I too, was checking out the UK site for Sinemet CR inserts and noticed that they do not want you to take the half pill, but the USA insert allows it. From what I understand that if the controlled release coating is broken it effects the CR purpose of the pill. I may have misunderstood this, but I do know that mom had more problems when the half pills were used, especially nausea, but other things as well. Anyone know anything about this??

I was seriously thinking about DBS a couple of months ago, but since my meds are back under control, Im gonna put that on the back burner for now

Atleast I know what Ive got right now..DBS is a big question mark

The CR is controlled release. When the pills are crushed, chewed or otherwise not intact it destroys the timed release of the medication. Hence, the side effects. Likewise CR takes too long to kick in for me so I dont use it except perhaps overnight, taken prior to bedtime. Then I can get on in the morning quicker with a little in my system.

http://www.parkinsons-information-ex.../msg01130.html

the 50/200 tablets are scored, i would assume they wouldn't be if they weren't supposed to be split.
seems to be some confusion here.

It IS ok to split the 50/200 CR tablets, but not the half CR.
Presumably the smaller dose which is a smaller size has a matrix that won't deliver the slower release properly due to some kind of size restriction.

i am sick to death of all of it...

Some PWP (actually most) are highly sensitive to any changes in medications- even a different time of dosage. For example, I recently felt as though my Requip XL was not serving me well, and it was very expensive. So I checked into ropinirole (regular Requip) and found that it was now in generic form. That meant considerable savings, too.

I had a week from hell, also! I spent more time "off" either piled up on the bed with bad dystoonia or crawling around the floor of my house to keep from falling. One of my grandkids saw me and asked, "Nana, why are you crawling in the floor?" I told her because I couldn't walk - and I'm sure that was due to the change in meds.. My son, who used to work as a pharmaceutical rep, said that generic drugs can have up to a 15% difference in key ingredients either way (too much or too little) from brand name drugs. That could make a huge difference in controlling my symptoms!

Your time of dosage, what you eat or are going to eat, your mood, whether or not you are suffering with anxiety, depression, or insomnia - ALL of these things can cause complications with being more symptomatic.

I empathize with you, Steve. Just hang in there !
Peggy

Thanks Peg, and I am hanging in there..During this year there has been a major change in my pd, for the worst, of course..I knew it was coming sooner or later..I didnt realize how good I had it before, when I could miss a dose of meds and not even realize it..At the end of every week, there was always a few pills rattling around in my med box that I forgot to take..Now Im afraid not to take them, and afraid to take any extra to get through the day, because either way, theres a price to pay for it..If I miss a dose Im a walking zombie, and if I take an extra dose, I get dyskinetic, and the wearng off period at the days end is brutal

The good news is when my meds are working I can do almost anything, including fishing almost everyday this spring and summer..But when they dont work, I cant even open my mail..Weird!!

I also have a vitamin D deficiency that I need to get under control..My Dr told me on a scale of 1-50, 50 being normal, I was at 5 a few months ago..Now with suppliments Im at 16, so I have a way to go yet, to get to 50..I have no idea how long Ive had this problem, but I wouldnt doubt that it has alot to do with the way Ive been feeling for a while

Steve

I have been battling a Vitamin D deficiency for over 3 years. The rheumatologist has put me on 4 weeks of theurapeutic dosage and supplements several times over this 3-year period only to have it be low each time it's taken.

And bone damage is the result, especially with baad dystonia. I have had 3 cervicsal fusions in my neck and both feet hae had metartasal fixation (where they put a pin/screw to hold your bones together).

My mantra: PARKINSON'S - IT'S MORE THAN JUST A TREMOR!

Peg