I did have problems with sinemet...it made me so tired I couldn't stand it....then they tried me on modafinil which you described in an earlier post and that was like doing cocaine....they give it to military pilots who have 48 hr missions. I quit that crap right away. I'm sorry but I refused more pills so I cant help there....but if he is suffering from sinemet psychosis they will take him off it and likely start an atagonist of some sort. it took me a long time to come off the sinemet.....I had been on 3 years 25/100 6x day. I refused to go on other meds. as for Seroquel I was on that for 3 years and loved it, its an antipsychotic and keeps you sleeping at night. Additionally it is one of the only antipsychotics available to PD folks that is safe according to the parkinsons foundation. if I was close id come help you...


hope this helps, ill keep you in my thoughts.


BT

Lynnie your husband is on such low dose sinemet I find it hard to believe he is getting too much but if the Seroquel helped that would be an indicator of too much levodopa as Seroquel blocks the uptake of EXCESS levodopa. It sounds to me like you need to explore the dementia route just to be safe. I would not take crap like modafinil for lethargy/somnolence...its as much as $1000 a month without ins and most ins grumps pretty bad about prescribing it. I didn't sleep for 2 days after 1/2 dose of modafinil........


hang tough

BT

I did not go off Sinemet, but they added Requip this last month. Requip is like putting a nitro pack in the gas tank of your race car. It speeds it up. The Sinemet was wearing off too soon. After 3 weeks with Requip, I can think more clearly, overall I am more alert, and am getting better sleep at night.

The bad thing is I can suddenly fall asleep in the middle of whatever I was doing.

Dementia is a definite issue explore. The "Lumosity" is a great computer program to do daily exercises to try and keep you mind as sharp as possible. My husband got me the coloring books, and it has been helpful is taking my mind off the pain and other issues. I think is would be good to stimulate the brain and help with relaxing also.

I may be wrong, but most of the meds that I have seen and used do cause some fatigue. Maybe schedule the day with breaks every hour and a short nap. Not sleeping well at night is an issue also. I am using a device that monitors my sleep and shows interruptions. I only sleep about 1 and a half hours at a time. Might be worth while to has a sleep study done.

When I take my breaks I do the "Rest and Relax" guided meditation on my phone. It is set up for 5 minutes; 7 minutes and 20 minutes. In PT they told me to do the 5 or 7 minutes every hours to help relax my muscles so I would not get as tired during the day. The app can be used on a smart phone. it is $1.99 and is called "Rest and Relax" it has a face on it with short black hair.

As far as his hand writing, maybe look up some hand strengthening exercises. In PT they had me putting large pegs in a board. After putting in about 7 of the pegs my hand would not pick any of them up. Did not realize how weak my hands had gotten. Also, the therapeutic putty is helpful.

This may sound silly but my husband signed us up for a "Doodling" class. It was fun and definitely gave my hands a workout. Check out "Doodling" on you tube. It is more fun that writing A B Cs.

Just some thoughts, hope some are helpful.

Stay strong. Schedule time for you also.
Hugs-RJ

great info thank you RJ.

BT

Lynni i take carbi/levodopa 25-100 2 tablets every 3 hr last dose is at midnight. I also have DBS. So far his works for me . no dementia or loss of memory. Sometimes i have trouble sleeping wake up early 3 or4 am but i keep my self busy dong needle work, Usually i wait for my first dose and go back to sleep. I keep my self occupied by painting water colors or colored pencils. Paint friend portraits or there children or pets, I only started painting when i got PD. that keeps me from sleeping during the day.
I am truly sorry for the problems you have, i wish i could help . But so far i am not to complicated ,so just my heart go to you hoping that you find an answer.

I have been on sinemet for about 10 years or so. I have never gone off of it so I can't give you any advice. I just have to say that you are a very caring, loving, determined and loyal wife! I commend you for your strength and perseverance. My thoughts and prayers are with you!!

Christina

I was on the highest dose of sinemet available, but was switched to artane (trihexyphenidyl). I have had great success with it.

I was on sinemet for several years and found that the highest doses made me want to sleep... a lot. I took sinemet multiple times a day and would find myself (literally) falling asleep at the wheel 30-40 minutes after taking it.

I feel much better on artane. Long term use on sinemet led to a new kind of tremor (as a side effect); I don't have that problem on this medication. Sinemet also wasn't helping my brain fog, and artane helped clear some of that.

It took me almost a month to get used to artane though, I had been on sinemet so long. I hope you find what works for you!

Well we had the appointment last week with the MDS amidst a snow storm I had to travel through..........long story, but we stayed two nights in motel around the appointment. thank God.
Anyway, about 10 minutes before the appointment he took 2 - 25/100 levodopa and carbidopa so they could see how it reacted on him.
We talked to the nurse over an hour and during that time she did a memory test which he barely could accomplish. He was gradually getting sleepier and sleepier. By the time the assistant neurologist came in and tried to ask my spouse questions and even clapping his hand to get his attention, my husband was non responsive.
He was almost asleep.
Then the MDS came in and said that "We've been through this before meaning we talked when this first happened last summer plus hallucinations starting. and the pills making him fall asleep.
He said if he didn't take him, he would shut down and we are fighting 3 things against each other. PD, Dementia and medication.
Don't ask me to explain it as I was getting more tired by the minute.

Anyway, he said we are finished here because of his heart problems they are limited administering certain drugs to help.

I must have given the specialist a look sadness, etc. Then he said , there is something we can do but it will require more work for me and it is just an experiment.
Instead of 2 pills 4 times a day, we could try taking 1 pill 8 times a day, or every 2 hours.
Also at bedtime give him Seroquel to help him sleep and reduce the hallucinations.
Well I started spacing the pills the next day and at bedtime gave
12.5 mg of Seroquel which is the very lowest dose he can take.
He slept for 2 hours and then up for the bathroom, but couldn't get back to sleep and unsettled and didn't know what to do and crying.. Complained about his chest and stomach hurting and his system not feeling right.
This scared me a little but managed to get him back to sleep, however the rest of the night was unsettling and up and down.
The next day I called the pharmacist and he said to not give the Seroquel for 3 nights since the doctors or pharmacist wasn't around.
then give the pill and see what happens that night.
The first time might have been a coincidence, but if it happens again, then we know not go give it to him anymore.

Since administering the pills 8 times a day, he is sleeping more, which is probably the change in timing, but Sunday he stayed awake for a longer period and seemed more normal, joking and kind of dancing with his hands.
However in the morning he is very confused but that is probably the dementia working against him.
Who said LIFE WAS EASY, Eh?
So well see what happens tonight when I give him the tiny, tiny pill, so I can continue the rest of my story.......... hopefully a good result. :.>)

Can you guys tell me this a.s.a.p? If instead of taking 2 tablets of 100 & 25 mg. of LEVODOPA and Carbidopa 4 times per day like my husband has for about 8 years, and changing it to 1 tablet 8 times per day, (every 2 hours) would that interfere with strength in the arms and create more tremors when doing physical things like getting up from a seated position.
The MDS is doing this for 8 times per day to see if he is less sleepy,
but I think he is sleeping more and created tremors when trying to get up from chairs.
I explained in the comment above about the change and also suppose to take 12.5 mg. of Sequel.
I only gave it one night and it created a stomach and chest ache for a short time and his system felt off.
The pharmacist said to wait for a few days, but yesterday his behavior strength and confusion lately has been off especially the confusion , so I didn't want to have to deal with that pill in case of a reaction again.
I put in a call to the clinic nurse so hopefully she'll call today as the next 2 days she is in Clinic and doesn't answer until the next time in office.
I am just beside myself when he doesn't respond to my questions.
He seems in a fog, so it could be the dementia acting on him.
This happens mostly after getting up in the morning or in the middle of the night.
I just wonder if the Sinemet is doing it as per changing the way it is given. He isn't taking any more or less...........

it seems like a logical move to me to spread out the 2 25/100 4x a day to half that 8 times.....that would lessen the off times...im not sure it is the sinemet making him so sleepy...im not on it and I battle sleep issues such as lethargy and somnolence all the time. Seroquel is not a great choice for someone his age because it actually blocks some of his dopamine but other than that is a great sleep med I have taken it.

it was extremely difficult to quit sinemet...very very...so difficult I refused to go on another med so that's all I know.....


BT

sinemet did make me more sleepy though that's for sure...


BT

Since I posted the last insert, I talked to the clinic nurse at the hospital where we were last week and explained what was going on with him.

She said to continue giving the Sinemet eight times a day and also it is important to also give the Sequel. at bedtime.
It is the very lowest dose and it should help to settle him down.
She said to give it two weeks in order to work properly.

She said I am doing everything right and to just hang in there and she knows how hard it is.
I feel better since talking to her and not so upset about things.

So glad you were able to talk to nurse. I know when I first start on new meds or adjust my meds it talks time to adjust to them and usually the initial side effects go away or lessen over time.

Remember to take care of yourself during all of this also. I know how hard it can be. When my husband went into heart failure and had a stroke things were very intense. Over time, and various doctors and medications we finally have him back to a better quality of life. At first he slept a lot, was confused, and many memories were lost. This is hard for the caregiver. Pace yourself.

Thinking of you and praying for both of you. Give the medicine adjustment time, hopefully you see positive results soon.

Warm hugs-RJ