My dad has had Parkinsons for approximately 6 years or so now, with the last 4 on Sinemet.
His doctor added Comtan to his regimen back in November. Since the. We have noticed some disturbing behavior.
He was on 3 25/100 tablets every three hours between 7am and 7pm. When the doc added Comtan, he said he could take one full pill with every dose. Well, that was a disaster. He got to the end of the 2nd day and was as dyskenetic as I had ever seen him, heart racing, said he felt like he was coming out of his skin.
I got him to reduce the Comtan to every other dose. He was still incredibly wired all the time so we reduced the Comtan to 1/2 every other dose.
Dr. Okun had mentioned that he recommends that his patients who have trouble with Comtan move their doses closer together and reduce the Comtan.
So I got him to do 2 pills every 2 hours, and wanted to get him to 1 1/2 to see if that was adequate to give him benefit without all the side effects.
He shops compulsively, is sorting and organizing nuts and bolts in the garage until 10pm (and claims he does that because if he sits for any length of time he stiffens up and can't move), has odd thoughts and sometimes, esoecially towards the end of the day seems disjointed in his speech as well. Not to mention that he and my mom fight like cats and dogs.
He looks strung out physically. Both my mom and I are going to go to his next doctors appointment with his neuro with him, but should we continue to try and taper him down in the meantime?
His doctor gave him license to fiddle with timing etc of his dosages, but it just seems like he's getting far too much dopamine.
Anyone have any experience with anything similar happening?

Formydad
There really is no necessity to rush pill adjustments. I recently started Comtan (adding it to 100/25 one tab 3 hrly, a total 5 tabs day) and began on one pill a day for nearly a month before I increased to two then three. That way i was able to monitor my reactions and medication effect and I felt in control of what was happening. It also avoided the dreaded 6 week diarrhea that people can get with comtan.
In the end I didnt like how it made me feel and have weaned myself off it.
Im not sure why comtan was added for your father. it seems your father is on an extremely high dose of sinemet already, am I right 18 x 100/25 day??
Believe what you see and dont be afraid to do what you and your father feel is best.
(Ive had PD diagnosed nearly 6 years)

my advice
1. if you haven't gotten it already, get the PARKINSON'S DISEASE TREATMENT BOOK by AHLSKOG
it is a troubleshooting tool for figuring out which meds to try and what doseages to take and schedules.
2. when you post here, please indicate your dad's age,, what other meds he may be taking, his other medical conditions, what drugs had been taking. daily drug totals, what his symptoms are, is he seeing a neuro, how many neuros have you seen and if one was a MDS.
you can set this up in your profile so it gets included in every post. otherwise your're expecting people here to guess at that info or reread all your old posts.

i'm not going to try to advise here on meds much, you need to see your neuro.

i'll mention that protein can greatly inhibit the benefit of l-dopa, if you haven't tested this with your dad see how he does without breakfast and fasting until 11am, see if the sinemet works better. i stopped taking green tea capsules at the same time i took sinemet, felt it reduced the affect so it's really amino aciid content you need to check. constipation can reduce l-dopa absorption, slows gastric emptying whicH is also something you might want to check.

my basic question is how is he at his best? his worst? is he "satisfied" when at his best? if he can have a few hrs of quality time at that frequent dosing then that might be a basis for figuring out how to maintain that status only on sinemet otherwise maybe you need to discuss an agonist with his neuro, so elderly people can tolerate them.

i've read some people do better on a different generic, i use TEVA. might not matter.

everything i mentioned here ia covered in much more detail in the book. be prepared when you see your overworked neuro, i always take written questions or email them in advance. i'd bring the book but might insult him/her.

Hi, Sorry to hear your Dad is having so many troubles. Though we are all just patients here we can tell you what we know and about our own experiences. So here goes. Everything I have heard about Comtan, and that it is claimed that it will do is about getting Levodopa to the brain more effectively. My own experience was that I needed to lower my Sinemet as I upped the Comtan.

I was started of on this with one dose of Comtan a day for a week, then the following week add a second dose until I was taking three. I was also told that if I got jittery I could wait a bit longer before adding a dose. All in all it took me about 4 weeks to add the three a day.

By then I had noticed that I seemed overmedicated, had some extra movements etc. and having previously adjusted Sinemet successfully with the help of my PD nurse I decided to slightly lower each dose as gradually as I had increased the Comtan. I would not advise anyone doing this on their own, I had my nurse available at the end of a phone line if I needed, not everyone has this.

I found that I was able to reduce Sinemet intake by about a third, and get a better response with Comtan. This may not happen for everyone, and it could be that your father is one of the people who are sensitive to it, and for whom it is not suitable. Still it sounds as though he is very overmedicated, and I would ask his neuro about this and what is the best way forward. If he agrees that your dad is overmedicated work out a slow safe plan to reduce Sinemet with him/her, and take things as slow as needed to stabilise things.

PD medications are powerful and med changes are often problematic, it is important to have patience in getting things to a place where things are working well.

Its nice that you are looking out for your dad. Best wishes in finding a way forward with getting him stabilised. If he has to come off Comtan it might be a bit bumpy too, but with time things should get easier.

Soccertese - we don't have that book, but I will order it ASAP.

I added a signature with his meds, and symptoms. When he is at his best, meaning not over medicated and he's "on", he walks well, no stumbling, expresses himself clearly, has decent fine motor skills although they certainly aren't what they used to be, and has minimal dyskenisias, unless something like a football game gets his adrenalin going. He works in the yard, does things around the house, etc.
When he's off,he's very stiff, freezes quite often and has trouble doing things that require motor control in his hands.
He fortunately didn't have any GI issues with the Comtan. He does suffer from constipation pretty bad, so the gastric emptying may be an issue.
The one thing he doesn't do nearly enough of is drink water. Do you all try and drink water throughout the day?
His doc is a MDS at the PADREC at the VA in SF. UCSF staffs that clinic, so the docs are from UCSF.
What problems can reducing meds too quickly cause? I thinking reducing the later doses to 1 1/2, and then slowly move that back earlier in the day. So he would be reducing by 100 mgs every couple of weeks.

sounds like your're in over your head as is your mother, you should find a support group that you like, especially one for caregivers. and ask about getting your father to see a physical therapist who can recommend an exercise program which will benefit him in general, not just his pd.

yes, water is important, i can't quantify if more or less will benefit but it's recommended that you drink 6-8oz with each dose which might be difficult with all the doses your dad takes.

i think the book i recommended will answer a lot of questions you may have.
as i've mentioned in other threads, i've met people in their 60's who have had pd over 10 years and are doing well enough to drive to a spinning class and they were taking comtan, sinemet,requip and amantadine, not saying your dad should be on that regime but read the book. obviously the fewer drugs the easier it is for someone to keep track of when to take their meds.