The 'off' of 'wearing off' is different from the spontaneous 'off' that comes later with PD treated with l-dopa. We often use them interchangeably but they are different. Nobody seems quite to understand why people spontaneously swiitch off and are unable to move...... there are lots of theories, but nothing that really explains it. So.......

As your problems seem to be associated with 2nd dose I wondered if they were to do with 'wearing on' effects where sometimes the kick-in period brings increased PD symptoms that feel worse than the original condition, and inability to move, rigidity etc feel heightened.

Entacapone (comtess, comtan, or in stalevo) can smooth this out in some people. Before going on this I had 2nd dose issues most days. Much as Rick described......

I sometimes think that there is no science to dealing with PD, it is an artform all of it's own!

Lindy

.....this will take awhile. But it is something that we all need to be aware of because, IMHO, it is a side effect of Ldopa use that any of us could fall prey to and think it was simply part of PD.

From time to time on this forum I have raised questions about electrolytes and their effect on PD. While generally met with a rousing silence, I have labored in the darkness of my garret and I have learned a bit that could turn out to be important to the whole mess.

I will try to keep this as brief as I can: There is a group of disorders called "Periodic Paralyses" jn which an abnormal reaction to insulin leads to potassium shifting from the blood into the cells over a period of minutes and then moving back over a couple of hours. Because potassium is vital for nerve and muscle function, the victim is unable to move during an "attack". Attacks have "triggers" which vary among individuals. The most common is a meal with a high carbo load, which messes with your insulin. <So you wake up and do well until shortly after breakfast. Protein instead of carbs helps, too>
Other common triggers include stress and sodium. <Anyone have problems with stress or MSG?>

These conditions are a type of ion channel disorder and are genetic with one important exception which results from hyperthyroidism <hyperthyroidism is more common among PWP than the general population. Also, a borderlinethyroid can shift into a hyper state as a result of severe stress>.

I just discovered that I had already posted most of the rest at this thread Look it over and see if it rings true in places. I am not saying that Ldopa causes this but I do suspect that it contributes.

sasha,

this article in the long older thread sounds like what you might be experiencing. it's an old article but they observed the end of dose deterioration . it is soccertese's post in the What Is Going On thread.

http://www.neurology.org/cgi/content/abstract/38/3/419

i'm completely interested in neurotransmitters - gaba, acetylcholine, norepinephrine and serotonin. i just learned that acetylcholine is the only neurotransmitter in the somatic nervous system;i think we are on the verge of new discoveries but you have to reapeat your issue many times as fiona mentioned before people really hear you. i'm going to put more in another thread.

i don't recall you saying how long you've had it but sometimes 3 hours is too long for a dose to last. It only occasionally is for me and if I forget a dose i will pay for it. I've gotten to know my metabolism pretty well.

Hi Sasha,
I get a "super off" each time I allow my meds to wear off,I am worse when this happens than I was before took my Stavelo.
The only answer I have found is to prevent the off by overlapping my meds doses so I have a continuous on time.
However, I have to let my meds wear off by evening, and I have to face the dreaded off. It is almost like a punishment for having a long on.
I also notice a slight worsening just before my meds kick in.
Ron

My experience exactly

Thanks, everybody, for all the responses. I'm taking my regular meds this week and charting what happens. At 7:am I took sinemet and mirapex (one full pill each, as dr. prescribed) amd 20 min later could walk - still fine at 10:20 but took 1/2 dose of meds as now prescribed. 30 minutes later could not walk. It is now noon and I still can't walk so took another 1/2 dose...No food since 9 am but that was protein as usual...this is quite a puzzle....Thanks for the very helpful info, Lindy - this does seem to be wearing on, a new idea to me...Thanks, Steve and Ron for the heads up about Staleva and, to Paula for the info and link - which I haven't read yet as just wiped out by all of this. Newrotransmitters - I remember being in college in the 60's when my text said there was only one universal neurotransmitter to help signals bridge the synaptic gap. And that was amazing!

Sasha