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10-15-2011, 04:28 PM | #21 | ||
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Sasha, 'wearing on' is another term for 'kicking in' ........... generally it means you feel worse while the sinemet gets going, then have a nice smooth patch, then they wear off...... it's all fun with this disease....... 4 medicines at once is a lot.......
Paula, so good to see you back here, sounds like the ride you have had was even rougher than I had thought it could be. This is something we know about, that we get bad reactions from drugs/anaesthetics etc., needs more awareness from medical people. Needs people like you to chart what happens so that others can benefit from your story. Get well soon, you are so missed when your voice is absent....... take care and mend soon...... |
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10-15-2011, 04:32 PM | #22 | ||
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Paula -
You are in my prayers and thoughts and anything else that may seem helpful in any respect. You have been through hell and I hope fervently the trip is almost over. Sasha |
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10-15-2011, 04:48 PM | #23 | ||
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Quote:
Psychosis is very, very nasty, and I know what I am talking about; the darkness and the pain that goes with the darkness is not imaginable; BUT, you are going to get past it. For you, as for me, it is a temporary thing triggered by the injury and the drugs and the PD; you will get past this, Paula. We need you back here. And what the H is pickle ball? Was that part of the water dance? Pickle ball? Is that legal? Anyway, it is not a cliche to say "get better soon"; don't force us to all drive to Florida and start an "Occupy Neurology" movement, surrounding your hospital, because I would throw my walker at the police barricade and get arrested. |
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10-15-2011, 05:45 PM | #24 | ||
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Regarding the new bottle of levodopa and batch no.
The batch no. should be written on the actual bottle. About not being eligible yet for a new script being dispensed by pharmacy can't you tell them you need it now? I'm not in U.S. or U.K. so don't know the rules there regarding time lapse necessary but I thought it applied more to drugs like morphine etc. Your pharmacy should sell pill cutters and some sort of timer is a great idea. Mixing a whole tab in liquid I think might not give you such an accurate dosage if your aim is to have 1/2 or 1/4 of a 100mg tab at regular intervals. I remember my neuro telling me that. The other anti parkinson drugs you take I can't say I've tried although I've taken many over the yrs. Good luck with it and experiment a bit with these ideas maybe? Paula, get well soon. Thinking of you and missing your posts! Lee |
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10-15-2011, 09:08 PM | #25 | |||
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You are definately in my thoughts and prayers!
__________________
There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK |
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10-15-2011, 09:23 PM | #26 | |||
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Sasha, sorry for my fuzzy suggestions re taking divided sinemet doses after dissolving in water.
Because I automatically think about volumes quantitatively, I assumed that others did also. When i suggested "a measured volume of water" I was thinking eg, 100 mg tablet in one cup, then sipping measured fractions of that; 1/4 cup at a time to take 25 mg, etc. Paula, you know that everyone on the forum is pulling for you with all our might! I'm confident you will pull through this severe trial. Praying for quick resolution. Robert |
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"Thanks for this!" says: | made it up (10-16-2011), Sasha (10-16-2011) |
10-15-2011, 11:19 PM | #27 | |||
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I noted this was an old post, but nonetheless one still of interest. I too go off and have a short (15-20 min) of nausea about 15 to 30 min. after taking my meds....This is totally an uneducated guess, but due to the size of the levodopa molecule we have to take a larger than necessary dose to penetrate the blood brain barrier (BBB). Basically, the meds temporarily puts our bodies in a toxic state, in order to get sufficient L-dopa across the BBB.
Am I close in my understanding of this? Peggy |
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"Thanks for this!" says: | Conductor71 (10-17-2011), lindylanka (10-16-2011) |
10-16-2011, 04:57 AM | #28 | ||
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Senior Member
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There is a proper recipe for 'liquid sinemet' that is used for people who have swallowing difficulties. It ensures that you get the correct amount and that the active ingrediant does not degrade. If anyone knows this, please post. I have forgotten where it comes from. It is for sipping.
I do agree with Peggy on this, we are taking way over the 'right' dose just so that some gets to our brain, and for each of us the absorbtion is is going to be different. This became very evident to me when my PD nurse added entacapone to my regime, having deduced I was way undermedicated. The difference was astonishing to me, and I had to rapidly work out how to get to the best dose for me. This is a process that I think ought to be at least discussed with patients, the three a day paradigm is a one size fits all model, even if the number of tablets is greater than that! So many different factors to work with.... and our brains are sensitive to this stuff. When I have problems I have learned to try a little less, rather than a little more, as my first choice. Right now it is working for me, and I prefer the very slightly undermedicated to being overmedicated and head-charged with a wayward body. |
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10-16-2011, 08:45 AM | #29 | ||
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Hi Peggy,
Thanks for adding to the hypothesis-building segment of this thread! (I do kind of feel like this is what has been happening). I used to get the nausea after each dose too. I totally believe that the word toxic applies. But then my neuro responds with raising meds if there is a problem. After a few days at the higher dose, my body likes it increase in its addictive substance... Up most of the night with muscles tight and hurting. Do other people take meds at night? Sasha |
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10-16-2011, 08:45 AM | #30 | |||
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Quote:
I will extract the recipie itself and post it separately. |
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