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Topic Sinemet and excessive sleep...? Go to previous topic Go to next topic Go to higher level

By makrivah On 2015.10.01 16:58
My husband's naps (he says he's checking his eyelids for leaks) had gotten so excessive I contacted his doctor to discuss what could be done. The doc suggested that the 8am and noon dose of sinemet (C/L 2 pills of 25/100) be halved. I resisted at first thinking my husband would get the shakes, etc. He said if that happened, then go back to the 2 pills. (No change to the 4pm and 8pm doses of 2 pills 25/100 of C/L.)

For this to be a true experiment, I did not tell him about the change in medication. I ask him how he's feeling several times during the day. He hasn't had any negative feedback.

It's been a week. I am amazed. He is more alert and talkative. I see some increased slowness, the same shuffling gait, and minor tremors, but nothing like what I expected. Now I'm thinking he may have been over-medicated.

Has anyone else experienced this rather remarkable response?

By Lynnie2 On 2015.10.02 16:43
Gosh I wish our doctor would think the same. I should take this letter to the family doctor and see what he says.
The MDS said that if he didn't take the pills he would not be able to do anything.
My husband naps all the time.
He takes 2 x 4 100/25 mg. per day.
It seems about an hour after the dosage he is sleeping.
When he is tired or sleepy, it's hard for him to concentrate. He sits in his recliner and drools down his shirts so I have to do more laundry. His mind isn't the same either.
The MDS did give him some medication to make him more alert, but first he was nauseated and then a headache.
He didn't take many but felt worse when he took them, so we discontinued.
He also has A Fib so can't take certain pills.
He also has problems finding words so can barely make a sentence to tell me something. His voice is soft so we are doing speech therapy to try to raise the volume.

Did you gradually reduce the medication as we had to gradually increase them.....
Oh, and he has started having hallucinations too which could also be caused from the Sinemet.........
When I talked to the MDS's nurse she said the doctor would recommend Seroquel. I looked it up and its for bio polar or Schizophrenics and would alter the brain. Do we want their brain altered anymore?
The hallucinations don't happen all the time, so I'll see what the family doctor says and hopefully he will agree to decrease without the MDS's opinion.

I see your husband takes them every 4 hours. My husband takes them at 7, 11, 3 and 8. Why does your husband take them at noon? We were told not to take them with protein which we always have with lunch at noon.

By Lynnie2 On 2015.10.06 07:53
This is me again, but if you are reading this, do you mind telling me if you reduced your husband's dosage gradually or just simply halved the dosage immediately.

My husband is complaining about the medication as making him feel ill and he thinks and I think it's the cause of his sleepiness and could be the hallucinations too. (they don't happen every day, but periodically)

I don't think we can fool around with Sinemet without the approval of our doctors, but we don't see the family doctor until Oct. 23. and it's difficult to talk to the specialist. His next apt is in Feb.

They say Sinemet is suppose to be the best medication, but I wonder sometimes.
I wish I knew how he would be without the medication, but the MDS said if he didn't take it, he would not be able to do anything.
It is just sad to see our husbands be the way they are. I feel so frustrated about the medication.

By LC On 2015.10.06 08:16
Please, please do not reduce the Sinement quickly. It needs to be done gradually. I learned this the hard way. We have a neurologist who didn't really understand PD. We now have a MDS. It makes such a difference.

By Lynnie2 On 2015.10.06 09:41
Hi LC,
Thanks for your reply.
We weren't actually going to reduce the Sinemet until we talked to the family doctor or his MDS.
The problem is I don't know if the family doctor would recommend it without the MDS's approval.
We see the family doctor in 3 weeks, but don't see the MDS for a 6 month apt. until Feb. unless the family doctor can contact him about it.
In July when he was at the 6 month check up we talked about his sleepiness and he prescribed
Teva Modafinil 100mg. (I don't know if it's the same in the USA.) but my husband had side affects so discontinued it and since he has A Fib, any other medication wouldn't be good either, so it limits the options.

I was just excited when I read about Makrivah's situation with her husband and thought maybe it would work with my husband.
He just doesn't act like he should and after taking the medication, he is sleeping in the chair an hour later, so something isn't right.
He's had PD for 8 years on only 67 years old and it's hard to see him be this way.
He has problems communicating which is part of PD or is it also the medication making his brain dull.
He just searches for words and can't get his thoughts out and it's so frustrating for him. Half the time he just gives up as you wait and wait for him to get it out.
He is taking speech therapy to get the volume up.
Anyway, I am getting off the subject.

I think I'll see what the family doctors says and go from there.........
but another problem is that he has been having hallucinations since June on a period basis and the doctor said if they continue, there is something that won't affect his heart that he can take.
So as you can see things aren't the same..........
Thanks again for your input.....
we'll be okay........

By makrivah On 2015.10.06 11:48
Almost two weeks now since the gradual reduction in Sinemet. He does sleep less in the morning and early afternoon, but the shakes have returned as well as the trouble finding words. I've noticed his thinking has returned to being quite slow. As soon as he takes the 4pm dose, he's asleep within 30-40 minutes for several hours, waking for dinner and a bit of TV. At the 8p dose, he's out for the night. So its a trade off between physical symptoms returning or sleeping. He is uncomfortable with the tremors, constipation, etc. The cognitive symptoms remain the same with or without the sinemet. It's a difficult choice. His doctor is leaving it up to me. I've talked it over with my husband. We are going to add the 8am pill back for a week. Then add the noon pill back if needed (I assume it will be.) I'm not sure why he had such relief for a week or 10 days. I thought sinemet was washed from the body in 3-4.5 hours. I'm sorry if my earlier exuberance misled. I was so hopeful.

By Lynnie2 On 2015.10.07 15:17
Hi Makrivah,
Thanks for the update. I am so sorry that things didn't work out the way you were hoping. We seem to get our hopes up by trying different things.
In January I asked our MDS if it would hurt to take them a little further apart.
He said you have to be careful at this point.
Right now I am having him take the afternoon dosage an hour later, and the 8 p.m. dosage a little later.
Sometime we forget to take the 8 p.m. dosage on time, so it really doesn't make a lot of difference.
He doesn't really feel the kick in after taking the meds.....
Does your husband feel differently after taking them?
The students at the university have asked if he feels any different and he doesn't.
I will see if our family doctor has any suggestions...

By makrivah On 2015.10.07 16:40
I'm working back to the same doses before this experiment started. C/L (25/100) 4xday (8am, noon, 4pm, 8pm). Lengthening the time between doses doesn't help since the "off" time starts at 3 to 3.5 hours. His doctor was hoping that the "off" times wouldn't be too bad and that my husband might stay awake during the day and sleep better at night. That didn't work. My husband was uncomfortable. So we are back to the way it was before...take pills, fall asleep in 30-40 minutes for 2-3 hours. He's "off" when he wakes up. Then another pill, 20-30 minutes later he's asleep. At least he isn't in pain or otherwise frustrated.

My husband doesn't have a "kick in", more of a gradually relaxation of the shakes. C/L must take the edge off.

With the 8pm dose, he will fall asleep in his chair by 9pm and sleep for hours. I go to bed at 11. He has asked me NOT to wake him then if he is sleeping soundly. He almost always is sleeping soundly. Somewhere around 3-5 he'll be up to pee, rub a cramp, etc and has trouble going back to sleep. So he will get up, sit (recline) in his recliner and watch TV. He is shaking but waits till 8am to take his C/L. And the cycle starts over for the day.

I'm becoming accustomed to this pattern. He has given up golf. His penny ante monthly poker is a thing of the past (the guys stopped including him when he couldn't track the game). I encourage him to have lunch with the guys. I always give him the option of running a nearby errand to get him moving. As his doctor told him years ago: "The TV is a mind and body killer. You must think and move to keep PD at bay." I agree. But I have a Sleeping Beauty.

God bless everyone. Keep smiling.

By LOHENGR1N On 2015.10.07 16:53
Linnie, You have his MDS treating his disease, they have more of a handle medication and timing than his primary care physician. This is why he is seeing the movement disorder doc. When fighting this disease we want every doctor on the same page and being kept up with any changes. These changes should be endorsed by the Doctor with the most expertise. It can be not only counter productive to make changes unknown to the doctors it can also cause problems as a doctor will look at his notes and go from there adding or reducing medications. We try different things with the doctors blessing and if not at least with the doctors knowledge. it is dangerous to tinker with the timing, especially when the doctor tells you, you have to be careful at this point. And it does really mater if we skip or take doses of med's late or not on time. Just my thoughts on the matter but we fight the disease unified not contradicting one doctors orders against another. We should not add, subtract or lengthen times of dosing without the treating doctors knowledge.

By makrivah On 2015.10.07 19:16
Al, I totally agree. At least this experiment was done at the suggestion of his MDS. It sadly didn't work out.

By Lynnie2 On 2015.10.07 19:27
I guess you are right about changing the time, but I was trying to make him stay awake more.
He doesn't sleep for hours, but just short naps. The longest will be after lunch for maybe an hour.
He also doesn't golf anymore or ride his bicycle. He attempted to ride the bike this Spring but realized he doesn't have the balance and didn't want to fall.

Our doctors keep in touch, but since we only see the MDS twice a years for consultation as he a very busy man, and you make appointments 6 months or a year in advance, then my closest option is the family doctor who is very caring and takes his time with us, however appointments with him have to be made in advance unless something is needed immediately.

I don't think our family doctor would change things without the other doctor's advice or approval. and they exchange reports and they send reports to each other.

Yesterday morning my husband went on his recumbent bicycle and 30 minutes and in the afternoon we did his speech therapy, however because of the timing, he became tired and had problems reading, and got upset.
He is so frustrating when he can't get the words out even when reading it.

Anyway to get his mind off, it we went for a walk around the neighborhood,
holding hands......:).

By carman96 On 2015.10.08 09:42
My husband has been taking naps in the morning and afternoon even before he was on Sinemet. I think PD causes fatigue no matter what.
It's okay with me if he takes naps because then I can try to get some phone calls made or chores done.
He takes Valium and melatonin at night. I make sure he is in bed early and he watches TV in bed. He sleeps pretty well except he has to get up to pee and sometimes doesn't make it.
Lynnie, why can't you call or email your husband's Doctors?
Our Primary care physician will call me back and I can email his MDS anytime.

By Lynnie2 On 2015.10.08 12:29
His MDS is also a Professor of Clinical Neurological Sciences at a University, besides taking patients, and a very busy man who is also a director of the MDS program, so they don't give out his email address.
He also sets aside one day a month to inject Botox and sometimes has students look on or inject the needles.
(My husband has excessive blinking so every 3 months has Botox to help this symptom.)
He also has a column in a Parkinson's magazine, where he answers questions that are submitted to the editor through the Parkinson's Society.

The nurse doesn't give out her email either and appointments are made by the receptionist months ahead.
I might be able to call his clinic nurse, I don't know, whether that's possible now as I think that's changed too.
I forget right now..........have to look it up...
I am also afraid that the napping and the cognitive problems are the progression of this darn disease........
It just make me sad to see him go down hill..............

By carman96 On 2015.10.09 09:31
My husband's MDS is a professor at the University also, and very busy. Only sees patients twice a week. She also is the mother of two young children! I always wonder how these women have the time to have babies when they spend so much time getting their education, then working at such a demanding profession. Type A personality and obviously super smart.
Have to make appointments months in advance, but she sees my husband every 4 -5 months. Did botox at his last appointment.
She takes her time with him and seems to really care about both of us. She wants me to have more help at home.
I guess I am lucky because I can email her anytime. She said I could call but I haven't had the need.
Yes, it's so hard to see our husbands decline. The medications help tremendously but only to a certain point.

By Lynnie2 On 2015.10.09 17:31
Our MDS is a man...
I was what the Botox is for?
My husband has Blepharospasms or excessive blinking. At one point it was affecting his driving as he blinked so much it made him very tired.
He doesn't drive now of course which is very hard on him.
Anyway, to get back to Botox, do you think Botox would help the drooling?
I haven't had a chance to ask the MDS yet..... I know they say it gives a dry mouth though, but maybe that isn't as bad as the drooling.
I certainly do more laundry as he doesn't put a towel in front unless I keep doing it.........

By umajane On 2015.10.10 12:12
In my husbands case the Botox has almost stopped the drooling completely. He gets the injections every 3-4 months.
It has made a huge difference.

By Lynnie2 On 2015.10.16 15:57
Where do they place the needles for the drooling and how painful is it?
Does it make his mouth very dry?

I have a hard time getting my husband to drink water.
He can go the whole meal without drinking. I am always telling him to finish his glass of water.

By umajane On 2015.10.17 01:28
They do the injections in his cheeks. He hardly feels it. His mouth does not get dry. He drinks water and juice and one cup of coffee in the morning and occasionally a Coke.
He is due for another injection in 2 weeks. He is starting to need it again but all in all it is such a wonderful thing. I almost forgot how bad the drooling was..

By Lynnie2 On 2015.10.17 08:33
I started a new topic about drooling, so could you look at it in the forum?

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