Parkinson's Disease Tulip


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Old 01-18-2010, 07:58 PM #1
aquario aquario is offline
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Default would welcome advice from the meds mavens and sinemet sages

I've been symptomatic for over 4 years with most of the indications being an increasingly unresponsive non-dominant arm including tremors.
As a teacher and a musician/dance accompanist the arm is now a considerable complication in my work. So I recently joined the sinemet caravan and wanted to know 1) is there a good way to mollify the nausea symptoms without interfering with proper absorption of the dopamine? 2) When I finish teaching this semester would it be difficult to wean myself off sinemet til I return to work? I've been reading about some of your negative experiences withdrawing from agonists and wondered if that was common with dopamine therapy as well?

Many thanks,

Jon
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Old 01-19-2010, 10:15 AM #2
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Default Very practical questions?

Jon,
Regarding your first question about the nausea, my experience is that accompanying the sinemet with three or four ounces of water (not milk) and a little low- or no-protein snack such as two or three crackers (no peanut butter!) or a piece of fruit will prevent the nausea nearly every time.
I have no advice regarding problems on withdrawing from sinemet use, although I would guess that might be a function of how much a person has been taking.
Robert
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Old 01-19-2010, 06:06 PM #3
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Default Go very slowly

Quote:
Originally Posted by aquario View Post
2) When I finish teaching this semester would it be difficult to wean myself off sinemet til I return to work? I've been reading about some of your negative experiences withdrawing from agonists and wondered if that was common with dopamine therapy as well?

Many thanks,

Jon
Jon,

I am not sure if I can much, but I have stopped Sinemet (and Mirapex) during the early part of pregnancy, and I would caution you greatly to have your neurologist give you a down titration and to do it as slowly as you can. I remember the whole experience as a sort of hellish nightmare- keep in mind that a rather sudden withdrawal of what your body needs will cause a serious rebound effect in symptoms. In other words, go off too fast with any of these meds, and you can go from having mild symptoms to experiencing more extreme things like freezing.

Please read up on neuroleptic malignant syndrome and akinetic crisis. There is a thread here from last year http://neurotalk.psychcentral.com/thread109734.html

There may be others if you try the search feature here.

Be careful

-Laura
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Old 01-21-2010, 04:28 AM #4
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Ho Jon,
Regarding Sinemet induced nausea, I can completely relate! When I first started on it, I took my first half a pill and the nausea literally brought me to the floor. On the plus side, it took care of the tremors! Then I started on a medication called Motilium and I haven't had many issues with nausea since then. It's also known by its generic name, domperidone. It's a common drug up here in Canada but hasn't been approved by the FDA (there were some reports of cardiac arrhythmias) Although it's an anti-dopamine drug (which seems counterintuitive!) from what I understand, it doesn't cross the blood-brain barrier to any appreciable extent, so it ends up blocking peripheral dopamine receptors (D2) primarily in the chemoreceptor trigger zone and the peripheral GI tract, both of which provide input to the vomiting center in the medulla thus blocking symptoms of nausea and vomiting. I'm not sure where you live, but it may be worth pursuing with your physician.
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Old 01-22-2010, 01:03 PM #5
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Default

It might be worth considering taking a little extra carbidopa also (in the form of Lodosyn). I too had severe nausea (and occasionally still do), and my MDS recommended the extra carbidopa. Helps prevent conversion of l-dopa into dopamine in the body, with the associated unpleasant stimulation of the vomiting center in the brainstem.

I don't remember where I read it, but I recall that carbidopa helps most with nausea and vomiting if you're taking at least 75 mg per day. If you're taking just a little Sinemet 25/100, you may not be getting enough carbidopa.
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Old 01-22-2010, 07:36 PM #6
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Default many thanks for the suggestions

I've added Robert's regimen of some fruit or a couple of crackers and that seems to have done the trick for now. The precision with which one has to schedule one's day around the intake of pills is a novel discipline for someone who lived through the '60's and whose mantra was often "whenever . . ." At least that era prepared me for this current one of experiencing "altered states".

Jon
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Old 01-24-2010, 12:50 PM #7
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Jon-
sorry not to have replied sooner - I wrote you a whole response and had an evil computer moment where I lost the whole thing - then in the past couple of days have been in the hospital for kidney stones (ouch! ouch! ouch!!!)

Ok, I think there is certainly hardly any official support out there for going on and off Sinemet at will. THe thinking is that if you need it, that's that, and there's no going back. I don't think it is designed to be used at will and I think any efforts to do so will be disparaged by your doctor. (Tell me I'm wrong if necessary...)

Also unless you do it VERY gradually in the coming off direction, you can get all kinds of unexpected and not so great problems that can even be dangerous.

I never had nausea with sinemet so I can't advise....I guess my personal thought is that while you are still at a place where you are not dependent on sinemet, keep exploring other possible approaches, because once you go through that gate, it is infintely harder to go back, and that's something we are not routinely warned about....I wish I were at your place now and had the range of options open to me that I feel I no longer have due to my dependence on the medication.

I'll write you a personal letter real soon...
Fiona
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