frustrated w/trying to find meds balance
 

Why isn't there a mood icon for Frustrated? My only PD med now is Sinemet 25/100 1 & 1/2 tabs 3 times daily and amantadine 100 for the dyskinesia. The dyskinesia is a nightmare-if i'm on i'm dancing! I've lost 45 pounds through the Sinemet weight loss program!

Is it dangerous to take smaller doses more frequently? This is what my gut is telling me to do.

I have been trying since the first of the year to find balance in my meds. I had a terrible neurologist who put me on some crazy stuff. I changed to a new one (my 4th). His first remarks were that he could not see my illness because I was so over medicated! Since then we have been changing stuff,waiting for results,waiting,waiting....

Now that I've vented-does anyone have any ideas.

thanks

Found this very informational book on Google books:

Parkinson's Disease Treatment Guide for Physicians By J. Eric Ahlskog.

There is a good section on 'liquid sinemet', managing sinemet doses, sinemet CR, and different types of dyskinesia and how to approach it. Perhaps you could discuss these with your neuro to see if there is something there that might help.

Try pages 178 onwards.......

Hope you find a solution soon
Lindy

Hi,

First let me say that you are not alone in the quest for the right med combo! I recently changed neurologists because my first one had me on way too much Sinemet, and she didn't want to work with me to alter meds. I was mildly dyskinetic but wanted to get off the crazy dosages because I felt I was courting disaster. In seeing the new doctor, I had to go in after being off all meds for 12 hours Please keep in mind:

1) Yes! You can lower your strength of Sinemet and dose more frequently. This is the idea behind Duodopa; an intestinal pump infusion of levodopa that is still in clinical trials here in the States, it gives a steady and lower dose that results in significant reduction of dyskinesias and near elimination of on/offs.

2)Have you thought of trying Sinemet CR? It's slow, controlled release over a longer period of time. It results in a steadier flow of levodopa minimizing the peaks and valleys- also almost eliminated my "dancing".

In my case, I found that Sinemet CR and a slight increase of my Mirapex has worked wonders! It has extended my on-time by 2 hours per dose. I also was able to significantly reduce the amount of levodopa I am taking per day. I just started this and so long as I avoid an "off"- I feel normal and it works well for me.

While we do have limited medications, we do have options on combining them- so hang in there! It is extremely frustrating finding the right balance, but your neuro should be on your side. Let him do the work for you in figuring out a basic regime and then see how you feel- adjust from there.

Laura

managing meds
 

1) Our metabolisms change through the day and the assumption that we should take "x" every "y" hours is silly. Trial and error is the only way to find your mix. The classic way to smooth things out is to crush a day's worth of non-CR sinemet into a bottle of water and sip a little hourly. Once you get things under control you can start shifting back to the more convenient tablets by starting when you first get up. Figure out what works for those first two or three hours and lock down that part of the routine. Then figure out what lets you push it out two or three more, etc.

2) In some (maybe many) cases, dyskinesias can be triggered by what we eat. A good jalapeno pepper sets me off. Ketchup seems to also. Another thing which kicks mine into gear is bright sunlight. Some of these things seem linked to overstimulation. Even the ketchup has high free glutamate which stimulates the NMDA receptors. So you may want to experiment there. I find it is easier to hunt for things which set me off and leave no doubt rather than something subtle. Try ketchup or stewed tomatoes in soups. The cell walls need to be broken down so a simple tomatowon't do.

The sinemet weight loss plan, I've been there!!
 

You're preaching to the chior. My last neuro told me that my PD was psychological, he didnt see any signs of the disease, just dyskinesia! Needless to say I had to stop seeing him, (I wonder why?). Here's my view, the dyskinesia are drug related-you are taking too much or your body is above the threshold for controlling your PD. You are going to have to reduce your doseage in order to get them under control. I found CR a great relief after I get "on" in the morning. Also try comtan it also comes as stalevo which is comtan with the levodopa but it was more expensive on my insurance. I have also found that you have to be patient, the drugs take a while to work(each day) as well as over a few days as your body builds up a little bit of a level in it. I also try to use the CR at night so that in the morning I'm not starting from zero. Hope this helps. Then ya know I just had to realize that this damn disease is so idiosyncratic in that it never behaves the same-your stress, diet, sleep habits all effect it and that can differ on a daily basis that it's just not something that you're going to be able to get a set schedule that you can count on, just get as close as you can.