Parkinson's Disease Tulip


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Old 02-25-2019, 08:54 PM #1
Tryguy Tryguy is offline
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After failing with the Hinz protocol, I tried C/L and added some mucuna l-dopa from the internet. The quality has been very reliable and I have gotten much of my life back. Still I search though... for something better.

An issue I would like to fix is sleep. Sleep is good only if there is enough dopamine in the brain reserve. The second it runs out, I wake up. I take another dose, sit in a chair for 15 min (for absorption) and go right back to bed and sleep. There must be a better way. 50/200 ER does not work..

Thoughts anyone?


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Old 02-26-2019, 08:49 PM #2
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Tryguy,

Same issue with me since mid January when I fell off the Parkinsons cliff after managing well since dx in 2007. All came about very abruptly, including major anxiety the moment I sense off period coming. Been in this vicious circle for about 6 weeks as PD creates the anxiety which in turn makes my symptoms worse and I shake uncontrollably.

Like you, I wake up when my "sleep dose" wears off after 3 1/2-4 1/2 hours and not gently. More like someone punched me and the first thing I feel is the lovely heat of anxiety in my chest. So I take another dose and try to add a couple hours more of sleep to survive the day.

Seeing neuro in March who put me on 2mg of Ropinirole xl (5weeks ago) to round off my dopamine declines. Can't tell if it's working with all the anxiousness and shakes though.

Looking for any thoughts as well before I see my doc, thanks.

Eric
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Old 02-27-2019, 12:35 AM #3
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TRYGUY,
IN LIEU OF taking an agonist at night to extend your ON time have you tried 300mg of 50/200er WITH A LITTLE OIL/FAT SUCH AS FISH oil capsule, butter/cracker, etc to try to slow gastric emptying which will extend the availability? just a theory. read a C/L PKG INSERT (ER) on bioavailability.
or set an alarm at least 45min before you predict you'll be OFF, take 50mgIR + 200ER, THE IR should kick in in 45min and the ER in 90min. that might at least remove anxiety. you might have to wake up only once.

Pharmacokinetics and bioavailability of Sinemet CR: a summary of human studies. - PubMed - NCBI
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Old 02-27-2019, 12:38 AM #4
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Quote:
Originally Posted by Tryguy View Post
After failing with the Hinz protocol, I tried C/L and added some mucuna l-dopa from the internet. The quality has been very reliable and I have gotten much of my life back. Still I search though... for something better.

An issue I would like to fix is sleep. Sleep is good only if there is enough dopamine in the brain reserve. The second it runs out, I wake up. I take another dose, sit in a chair for 15 min (for absorption) and go right back to bed and sleep. There must be a better way. 50/200 ER does not work..

Thoughts anyone?


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just curious, 50/200 never works, day or night? which generic are you using?
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Old 03-09-2019, 04:20 PM #5
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Soccer or anyone,
How long does the 50/200ER last for you at night and/or day. Neuro has me trying Rytary at night but not getting much out of it. Anyone have thoughts on the 50/200 vs. Rytary?
Thanks,
Eric
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Old 03-10-2019, 10:41 AM #6
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Soccer or anyone,
How long does the 50/200ER last for you at night and/or day. Neuro has me trying Rytary at night but not getting much out of it. Anyone have thoughts on the 50/200 vs. Rytary?
Thanks,
Eric
I have never tried RYARY. I would assume the RYTARY would work better than the 50/200ER though since it supposedly has a longer lasting extended release affect. my only advice would be test if adding some "fat" extends the affect of the RYTARY. IN THE following article which came out in 2015, mentions trying "fat", dunno if hauser still supports that idea but same lengthened half life is mentioned for 50/200ER, adding food will decrease bioavailability but will extend the half-life so you might try 300mg of 50/200ER at night with some black olives or some low protein carbohydrate with some olive oil added? less will get into your blood but it may last longer so try 300mg of the 50/200 or if you want to try just 250mg split one of the pills unequally and try to get 150mgER to add to 100mgER (not sure if the 50mg segment you could get by splitting again 1/2 of a split 200 would still have ER features anymore so better to use the 50mg ER chunck like it was an ER pill?. just a guess but the 100mgER tabs have no splitting line so aren't supposed to be split but the 200's have the line). i can get thru the night with just one 50/200 but because of my high blood pressure i set my alarm to wake up in 4hrs so i can check my BP and decide if i need to take more ER/CR to lower it for the next 3hrs after which i'm up. i've tried BP meds but my BP goes too low at times, so i use only C/L to control my BP, enuf said on this pd affecting my autonomic nervous system. i haven't tested 300mg of 50/200 with fat to see if it will last me thru the night, for me the goal is keeping my BP down for 7-8 hours while asleep, not preventing waking up in a panic, but if that dose keeps my BP down for that length of time it will also control my major pd symptom which is rigidity. i'll try it and report back.

"Effect of Food
As with carbidopa/levodopa IR, Rytary can be taken with or without food. One gets the quickest and most consistent (initial) absorption taking it away from food, but if a patient experiences nausea, taking it with carbohydrate may reduce the nausea. Protein can reduce absorption, but whether this is clinically relevant depends on how sensitive to small dose changes the patient is. Interestingly, high fat meals delay absorption and reduce the amount absorbed, but can potentially lengthen the duration of benefit. Although this has not yet been studied, one might take Rytary at bedtime with a high fat snack such as ice cream, in an effort to extend benefit into the night as long as possible. "

How to Dose Rytary by Robert A. Hauser MD 3-12-15 | Medical Treatments | Medicine
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Old 03-10-2019, 06:20 PM #7
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Soccer, thanks for taking the time. I will give the Rytary more of a chance and try it with a snack to delay absorption. I can eat half a cow 10 minutes after I take my usual dose of c/l and mucuna w/out a problem, but pay for it at the other end; sometimes up to 4 hours later after a medium/high protein meal meds still don't work, very frustrating. I try to be ON a bit when it's time for sleep so I can be comfortable enough to fall out, so the Rytary delay should not be a problem and could be a solution if it extends its usefulness.

Eric
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