Last Sunday I indulged in a family dinner (as you do Sundays) only to be struck down Monday morning with nausea and gastrointeitis symptoms from the dinner of the night before. After taking my first meds for the day, a big chuck (vomit) followed immediately, and the body completely froze. Nobody knew what to do, least of all me so my GP (family Dr) suggested the local Hospice where I spent the next 36 hours, unable to move and meds not kicking in. At one stage during that Monday the medical people tried a combination of double and triple dosing meds. Nothing worked. A saline drip was included. Over night the body improved and the meds kicked in and I went home with some optimism. The nausea and gastro symptons had completely disipaited. The off time period however had dramatically increased from a manageable/functional period into a difficult immobile state where assisted help is necessary. Tuesday night the body again went on strike with no meds kicking in and immobility rampant. Back to the Hospice for more observation. It was decided to change my not so powerful sinemet meds from Regular 100 mg sinemet to the more powerful 200 mg ‘Controlled Release” (CR) sinemet. The old 100mg regular sinemet of which I had been on since 1999 when I took meds for the first time, kicked in 30 minutes after absorption. The new 200 CR sinemet takes an hour to kick in. I have suddenly gone from 900mg of the regular meds (6x 1.5 tabs a day every three hours) to 6x 200mg per day. (1x tab every four hours) Half a tab of the old 100mg sinemet was added to offset the slow release of the new 200 CR sinemet. A total of 1500mg. I also take 3x Tolcopone a day. The big concern is once the meds wears off I am completley immobile. 900mg per day to 1500mg per day seems a lot to absorb. Any observation welcome particularly on the immobile phase that has set in and has the med people here perplexed. i am in new uncharted territory.

Hi Howard,
This looks like an infection of some sort. Just last week I experienced something similar. I was doing fine until I got a very heavy cold.
The worst aspect was When my meds wore off, I was dreadful, could not do a thing. For the first time I needed help to do the simplest of things, even dressing myself.
However, once the cold wore off, I was fine again. My neuro believes infections can hit a PWP a lot harder than healthy people.
Have you suffered a cold, flu, or some other infection? If you have and can erradicate it, you may find you are back to your normal self.
Ron

no flu like symptons. We are experiencing a long hot summer in this part of the world. Autumn (fall) has not arrived although we are in the middle of our autumn period. Fitness and health levels are excellent. The only sympton experienced was the nausea and vomiting which has now completely cleared. The new CR 200 sinemet is doing a great job once it kicks in an hour after taking. The off periods are daunting and unpleasant. Each day will be monitered. The longer on periods are brilliant. The contrast between on and off is huge and the immobility is devastating.

\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\ \\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\

Hi Howard,
Your vomiting could still be an infection. One other thing I thought of is sudden chane of meds can cause this sort pf problem. Have you made any changes there. Casting my mind back, I stopped pergolide suddenly, and I had the same dreadful offs. I went back on to it and slowly titrated off. I returned to normal, where unmedicated I can shower, dress and drive with no problems. Incidently, each time I have had very bad offs, I have to urinate very frequently.
Ron

Howard-

I had wondered if anyone else had had times when meds simply had no effect whatsoever. I mean triple and quadruple dosing and zero effect. I have had such episodes for about three years. Unrelated to infection but definitely related to diet, in my case. By trial and error, I have found it to be a reaction to MSG in food. This actually translates to MSG > glutamate > overstimulation of NMDA receptors > overwhelming of neural firing.

I don't know if there is a clue there or not. If no one else became ill, a pathogen might not be the problem. And no flu-like symptoms. Any unusual foods? Anything with seaweed?

-Rick

Hi Rick,

Carolyn will attest to my having the same problem. Just the other day coming home from a conference, we had a wonderful big breakfast. I ate eggs benedict and potatoes - cleaned my plate, a rarity. I knew I would pay for it and did - big time. I popped sinemet right and left...was almost on but my mouth wouldn't work. Kept taking it, at least triple dose. To no avail. I went into dystonia on the van to the airport and by the time I arrived, had to call for a wheelchair.

People wonder why pwp get so skinny. It's eat light or be "off". This happens to me regularly.

paula

Like Ron, my reaction also involves bladder going into overdrive. And, like Paula, eating out is a definite risk factor.

What I experience is definitely more than just the meds running low. They just don't work. Four to eight hours is typical and it is the most unpleasent part of the PD experience for me. A definite cognitive element too and a sense of overstimulation or, now that I think about it, more like a hypersensitivity to stimulation.

I can pretty much trigger it at will by eating certain things - all are processed foods MSG in some form. The hypersensitivity ties into that since the brain is itself on overdrive. I can only sit and withdraw and wait it out with the occasional crawl to the john.

I thought it was just me, but now I wonder how widespread it is. Also, it was not originally part of the picture but started around three year ago.

But let's not forget Howard. Was there anything in that dinner that might be suspect?

Looked back at my journal when I was first dealing with this. From two years ago, I wrote:

"
My symptoms in general order of appearence are runny nose, sensation of bloating beginning, loss of muscle tone in legs, heavy arms almost useless, tunnel vision, stiffness, cognitive disassociation, extreme urine output (as often as ten minutes). Weak as a kitten and just sitting waiting for the brain fog to lift. All symptoms in place by T+60 minutes. Then they fade in reverse order on a similar time scale. "

I am amazed at the detail in Rick's post in terms of symptom tracking-also others on this forum....these notes and recording of symptoms are a scientist's dream-where are those guys? Anyone ever thought of submitting their symptom log, for lack of a better name for it, to a research facility to see if they could make good use of it? Never thought of this before, but it sounds like there are more than a few people here who have kept meticulous records of their journey with PD and I can't help but think "there's gold in them thar hills"! Just a thought. Keep on loggin'!

wish I could keep as detailed a log but there seems to be SO much information and so many variables, including who's in the room at the time etc. But yes, dose failure, yes - and it seems the only answer to that is to "flood" my system with sinemet until 'something' kicks in and then I'm back to normal. I think it definitely happens in response to eating and nothing really in particular. Just can't eat a lot and expect to be functional afterwards....I think the pills just die somewhere on their way to working sometimes.....PaulaW, I had similar experience to you last week - with dystonia, etc., and it happened in an awful situation, a very public setting at my job with all the faculty and students and parents there. I have yet to find out whether I still have a job now. Upsetting, especially since the dystonia has been so much better lately.....

RonHutton, can I ask, what do you mean by slow titration? What length of time are you talking about....