Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 02-27-2019, 12:35 AM #11
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

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
soccertese is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eds195 (03-01-2019)

advertisement
Old 02-27-2019, 12:38 AM #12
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

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?


Sent from my iPad using Tapatalk Pro
just curious, 50/200 never works, day or night? which generic are you using?
soccertese is offline   Reply With QuoteReply With Quote
Old 03-09-2019, 04:20 PM #13
eds195 eds195 is offline
Member
 
Join Date: Feb 2015
Location: NJ
Posts: 153
8 yr Member
eds195 eds195 is offline
Member
 
Join Date: Feb 2015
Location: NJ
Posts: 153
8 yr Member
Default

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
eds195 is offline   Reply With QuoteReply With Quote
Old 03-09-2019, 06:18 PM #14
TheFallen's Avatar
TheFallen TheFallen is offline
Junior Member
 
Join Date: Mar 2019
Posts: 10
5 yr Member
TheFallen TheFallen is offline
Junior Member
TheFallen's Avatar
 
Join Date: Mar 2019
Posts: 10
5 yr Member
Default

Quote:
Originally Posted by splibsplab View Post
I am utterly astonished at the colossal failure of 99% of the western medical establishment with regard to Mucuna.

Particularly when it comes to YOPD.

They call Sinemet the "gold standard". How can something be the gold standard when it cannot be given in sufficient dosage to alleviate symptoms because of developing dyskinesia?


- splibsplab
TAKE BACK YOUR LIFE. Its our choice. Ive been diagnosed since 2010 and avoided meds for 4 years. Then took low doses only. Last night I dumped rasigaline, (Azilect) best sleep for 4 years. This Thursday the Macuna arrives, then I dump the poison that is added to synthetic L Dopa (Carbidopa (or benzerazide). Synthetic L-Dopa reminds me of genetically altered foods btw.

My precusors for seratonin, my own Dopamine and 300 other enzymes in pathways have been destroyed by neurologists. (The Machine)

THESE ARE MY MAIN PROBLEMS. Medication induced neurodegenarative processes. Thank God they are reversible. It wont be easy but the alternative is a faster decline, way faster
TheFallen is offline   Reply With QuoteReply With Quote
Old 03-09-2019, 09:17 PM #15
TheFallen's Avatar
TheFallen TheFallen is offline
Junior Member
 
Join Date: Mar 2019
Posts: 10
5 yr Member
TheFallen TheFallen is offline
Junior Member
TheFallen's Avatar
 
Join Date: Mar 2019
Posts: 10
5 yr Member
Default

Quote:
Originally Posted by moondaughter View Post
Hello
splibsplab-welcome to NT! It took me some time to figure out how to benefit from mucuna....when I first tried it it either didn't seem to work or it made me feel a little nauseous....it was only by chance I discovered that I could take a small dose of it if I combined it with one half of a 10/100 tab of sinemet .....I tried combining it with lodosyn (carbidopa only) with no result.. I also found that the mucuna extract was easier to take than powder and easier on my stomach.....and some brands of mucuna weren't effective for me.

No insurance and limited funds has made self-reliance necessary and early on I read that the dopamine agonists can cause terrible misery....better to stay with small amount of sinemet ... I too am horrified at the prospect of the psychological effects of the agonists even though some PWP seem very satisfied with them.

Mucuna definitely is my preference though I need both.

Kind Regards,
MD
Take mucuna with 5 HTP do not take carbidopa. See my other posts
TheFallen is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
moondaughter (03-13-2019)
Old 03-10-2019, 10:41 AM #16
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

Quote:
Originally Posted by eds195 View Post
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
soccertese is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eds195 (03-10-2019)
Old 03-10-2019, 06:20 PM #17
eds195 eds195 is offline
Member
 
Join Date: Feb 2015
Location: NJ
Posts: 153
8 yr Member
eds195 eds195 is offline
Member
 
Join Date: Feb 2015
Location: NJ
Posts: 153
8 yr Member
Default

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
eds195 is offline   Reply With QuoteReply With Quote
Old 03-11-2019, 09:16 AM #18
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

Quote:
Originally Posted by eds195 View Post
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
yep, keep in mind that 100mg of C/L will improve your symptoms somwhat yet probably only 5-10% of that gets into your brain and only part of that C/L gets to where it is needed in the brain since it has to diffuse there vs being manufactured where it is needed. this doesn't matter that much if your're still at the stage where you have what, more than 20% of your dopamine producing cells? my point is that the brain needs very little dopamine but if your're dependent on exogenous dopamine like we are then eating even 10grams of protein will block out most of the l-dopa you take until it is cleared from the blood plus any amino acids similar to l-dopa in the protein that gets into the brain is competing for enzymes in the brain that convert l-dopa to dopamine, blocking the enzymes receptor sites from accepting l-dopa. just speculating on that but controlling my craving for cheese, pizza, yogurt is tiresome. i mentioned this before but if i knowingly eat too much protein i'll boost my next dose from 150 to 250, and if i don't come on in 75min i'll take another 100mg, if that doesn't kick in in 45min i'll take 50mg. i measure my BP before taking another dose since i don't want it to go too low, luckily i seldom get dyskinesias. i tried generic mirapex which isn't affected by food, couldn't tolerate it, saw things that weren't there when i got close to 3mg/day. i could try requip-xl, seems like all the advanced pd'ers from britain who post here are on that, just have to push my mds to write me the RX. i have no good reason not to try rytary other than the cost.

hopefully inhaled l-dopa and the sublingual apomorphine will help out as "rescue" drugs but the cost might be too high.
soccertese is offline   Reply With QuoteReply With Quote
Old 03-12-2019, 10:05 AM #19
eds195 eds195 is offline
Member
 
Join Date: Feb 2015
Location: NJ
Posts: 153
8 yr Member
eds195 eds195 is offline
Member
 
Join Date: Feb 2015
Location: NJ
Posts: 153
8 yr Member
Default

I'm similar after dinner when one dose doesn't work I will keep adding smaller amounts in time frames you mention so that I can fall asleep without using up any of the dose I take right when the lights go out. Have eaten a fatty snack (Smart Balance on chips) last 2 nights just before Rytary dose and lights out. First night, 5 1/2 hours and last night 4 1/2 both followed by dose of c/l and mucuna and the nights were manageable, so thanks for the suggestion and Hauser/bioavailabilty links.

I just started the Requip xl 4mg up from 2mg which did nothing I could tell for 6 weeks but only a week in, will report back, hoping for something good out of this. Neuro says should round out my dopamine levels so I don't deplete so fast and crash which really rocked Jan/Feb with anxiety. Now I understand how bad those crashes made me feel and I've broken the vicious cycle of anxiety starting the moment I sense an off period coming, but still makes me shaky and mentally weaker.

Definitely interested in the sublingual Apomorphine, which was delayed end of January by FDA.... Sunovion Receives Complete Response Letter from FDA for Apomorphine Sublingual Film (APL-13277) | Sunovion

Here is a guy who uses the Apomorphine pen in the UK, hat tip to John Morris over at HU. Watch video - FYI - Parkinson'''s Movement | HealthUnlocked

Would be great if a rescue drug could help cut down on some of the crappy off periods you suspect are coming from a meal, first thing in morning or whenever.
eds195 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
soccertese (03-12-2019)
Old 03-12-2019, 07:15 PM #20
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
10 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
10 yr Member
Default

To help answer some of the recent questions posed in this thread, you can use an app that I wrote to draw graphs of levodopa equivalent plasma levels during the day due to different drug regimen. This is based on the pharmacokinetic properties of the drugs used and the idea of levodopa equivalent dose (e.g 100mg of levodopa/carbidopa is "worth" approximately 5mg ropinirole).

Parkinson's Disease Measurement: PwP, surveys, trials, analysis

Unfortunately, I've not been able to deal with Rytary within this framework. But, you can approximate one Rytary pill with four suitably timed and sized L/C IR pills. See,

Approximating the pharmacokinetics of Rytary using IR C-L

You're right the smoothing role played by ropinirole CR (Requip XL) is due to its longer half life.

John
__________________
Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
johnt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eds195 (03-12-2019)
Reply

Tags
article, excellent, mucuna

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Mucuna Extract vs Mucuna Whole Herb (Long Term Usage?) karunapod Parkinson's Disease 3 11-09-2017 11:28 AM
Stimulate Your Vagus Nerve, excellent article BioBased Reflex Sympathetic Dystrophy (RSD and CRPS) 4 07-31-2016 04:37 AM
excellent article jprinz99 The Stumble Inn 2 08-28-2012 12:59 PM
excellent w/c article jprinz99 Multiple Sclerosis 2 06-17-2009 02:42 PM
An Excellent Article Alffe Survivors of Suicide 1 12-01-2006 10:37 AM


All times are GMT -5. The time now is 03:29 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.