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sunbird

“On” when I should be “off”

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I’ve been taking Sinemet 25/100 for about four years. Some time after I started taking it, “on” and “off” times became very distinct. My last dose of the day is at 5:30 in the afternoon and this takes me up to bedtime at 10:00, when the medication starts wearing off. I get up at six in the morning, so that’s almost 12 hours since the last dose the day before. The odd thing is that when I wake up I’m very much “on”, and this lasts for one to two hours. I feel almost normal, like in my pre-PD days. From what I’ve read on the forum, this is completely the opposite of what other people experience – they are off when they wake up and need their meds to to make a start to the day. Does anyone have an explanation for my “reverse” condition, and are there others who have the same experience? Somehow I seem to manufacture dopamine while I’m asleep.

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Do you sleep good? (if so, HOW????) I read somewhere that dopamine can be somewhat replenished overnight, or maybe stored cos you aren't using it? I used to feel great when I woke up, or at least as good as I did on sinemet. Not so much anymore. Now I sometimes take my dose, then go lay back down for 20 minutes.

In any event, we are all different, so go with what works for YOU.

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Hi Sunbird,.  I take my last dose of 25/100 sinemet at 4. I have some tremors in the evening but not much else.  When I get in bed at 10 my tremors really lessen even though I am not asleep.  No problems when I wake up several times at nite. I take my morning dose at 6 but really don't feel "off".  Don't understand why i don't have any Meds for 14 hours but don't have a problem.  Lorraine

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MusicMan:  No, I don't have trouble getting to sleep, but I have to make two or three trips to the bathroom every night, so I don't get an uninterrupted night's sleep. Some nights I'm restless which disturbs my sleep, but on the whole no complaints in that department. Sorry, I don't know why, but if I ever find out I'll be sure to share the secret.

SoCalGal: Have you ever tried delaying your first dose of the day? I mean, if you didn't take it at 6 a.m. how long would your "on" last?

I suspect that some of us have enough functioning dopamine-producing cells to allow us to build up a small reserve of dopamine which is stored during sleep. I also wonder whether this is linked to a slow PD progression. Surely slow progression means exactly that: slower loss of those particular cells. I was diagnosed in 2007 and only started on Sinemet six years later.

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I remember feeling that way.( not any more) Getting up an feeling normal for a few hours. You most likely had stored some dopamine up over night which is why you feel ok in the morning 

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I too awake refreshed and "on" in the morning before taking any medication.  It lasts an hour or two.  In other words, I think that we're 'on when we should be on'.

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Wow, Patriot. I see you are now taking Sinemet. What was the deciding factor, and how much are you taking? I was always interested in how long you would be able to hold off with exercise alone.

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MM,

I'm taking one 25/100 C/L three times a day.  The deciding factor was when I was in the ER with a kidney stone shaking like crazy.  I realized that I had no medical options, since the hospital doesn't give medical marijuana out to shaking patients. What would happen if I had a real medical emergency and needed to be in the hospital for an extended stay? I also have a multi-state trip coming up, and taking medical marijuana along for the trip would be a legal risk.

The C/L does a good job on my symptoms, although it doesn't cover as many symptoms as the medical marijuana.  It also has more side effects than the medical marijuana.  Having said that, the C/L is more practical.

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Yeah, I kinda wondered about traveling with MM and how practical that would be. Well, you did good for a long while there. How is the combo of Sinemet and MM? I have both, but haven't yet found a happy medium using them together....

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I don't know about the combo of Sinemet and MM.  I haven't taken any MM since I started the Sinemet a few months ago.  I certainly don't need both.

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Hello

I can miss my morning dose without much concern if I dont exercise to much.

The brain is a complex organ.Two things that affect the entire brain are emotion and concentration 

It;s sort of like the locomotive and the rest of the train.PD being the caboose,lol

Ill tell you this idea I have of looking at my PD as a little problem helps keep it under control.

Sure I have anger and unrest come upon me but I know to resist it as a calm mind is major component in living with PD.

Dr Abraham .low said we must move our muscles and change our thoughts.

Nervous health is on a very parallel  course with PD as they both affect the brain

Of course we can.t tell our body to stop tremors or dystonia but  I can always get out of my misery by getting going again

Just a few observations for the day

 

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4 hours ago, PatriotM said:

I don't know about the combo of Sinemet and MM.  I haven't taken any MM since I started the Sinemet a few months ago.  I certainly don't need both.

So, the Sinemet controls your tremor pretty well? Doesn't do too much for mine, so I was thinking if I could find a good combo of MM and sinemet, maybe that would do the trick. Just not crazy about the buzz I get from MM.

Also, Sinemet doesn't help my sleep at all.

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MM,

Yes, both the Sinemet and medical marijuana do a good job on my tremor.  If the Sinemet alone isn't helping yours, then I think your idea of trying a combo is a good one.  It may just be a matter of getting the right combo.

 

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