Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 04-05-2015, 06:50 AM #1
Dan Murphy Dan Murphy is offline
Junior Member
 
Join Date: Jun 2011
Location: penfield, ny
Posts: 42
10 yr Member
Dan Murphy Dan Murphy is offline
Junior Member
 
Join Date: Jun 2011
Location: penfield, ny
Posts: 42
10 yr Member
Default Strange Phenomenon Can someone explain

I have been on carbidopa-levodopa 25-100 for 6 years. Up until 1 month ago I took 1 pill every 2 hours. A month ago I switched to Rytary 48.75MG -195MG 3 pills 3 times a day 4AM-12PM-8PM. Without getting into details of the switch I would like to jump to a strange phenomenon that occured while I was on each drug.
When the drug is wearing off I experience what will call withdrawal symptoms that verge on severe mild shaking, a system shut down, exhaustion. When I sense the beginning of the aforemetioned symptoms I take another dose of the medication and it takes a long time..up to 1 hr to eliminate these symptoms. When I awake at nite to go to the bathroom I struggle to walk taking what I call shuffle steps and having to support myself from time to time. Here is the phenomenon. If I happen to sleep well past the time the drug has worn off...a few hours I get up having no Parkinson's symptoms. I walk fine think clearly function almost normally until I take a dose of the drug. I assume I don't have any of the drug in me. The question is why when I am gradually coming off the effects of the drug do I have severe side affects but long after the drug has worn off little to no side affects. I have not tested how long I could go without taking drugs when this phenomenon occurs. Does this happen to anyone else and can you explain the signifcance.
Dan Murphy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SarahBain (04-05-2015), shcg (04-05-2015), villiers (04-06-2015)

advertisement
Old 04-06-2015, 03:22 AM #2
villiers villiers is offline
Junior Member
 
Join Date: Feb 2010
Location: Paris,France
Posts: 96
10 yr Member
villiers villiers is offline
Junior Member
 
Join Date: Feb 2010
Location: Paris,France
Posts: 96
10 yr Member
Default Same thing happens to me

Hello

I am experiencing the same thing as you since 6 months , currently on Sinemet 1,5 pill of 100 /10 x 4 times a day ......when the last dose starts wearing off around 10pm , i experience mild shaking , a bit of dystonia and after 45 mns...shaking stops totally , my symptoms are 90% gone ....and it lasts for about 12 hours , if i wake up during the night , i feel symptoms free , same in the morning ....i can shower , go for a 30mn to 1 hour walk with no problems at all ....right now writing on the computer with no problems too .....2 neurologists told me that the meds could have a half-life effect in the body for up to 12 hours ....but it does not seem the right explanation to me
sorry , i have no special explanation for this phenomenon but i wanted to tell that you're not alone in this situation
kind regards
villiers is offline   Reply With QuoteReply With Quote
Old 04-06-2015, 07:20 AM #3
Deangreen Deangreen is offline
Junior Member
 
Join Date: Aug 2014
Location: GA
Posts: 32
8 yr Member
Deangreen Deangreen is offline
Junior Member
 
Join Date: Aug 2014
Location: GA
Posts: 32
8 yr Member
Default

Quote:
Originally Posted by Dan Murphy View Post
I have been on carbidopa-levodopa 25-100 for 6 years. Up until 1 month ago I took 1 pill every 2 hours. A month ago I switched to Rytary 48.75MG -195MG 3 pills 3 times a day 4AM-12PM-8PM. Without getting into details of the switch I would like to jump to a strange phenomenon that occured while I was on each drug.
When the drug is wearing off I experience what will call withdrawal symptoms that verge on severe mild shaking, a system shut down, exhaustion. When I sense the beginning of the aforemetioned symptoms I take another dose of the medication and it takes a long time..up to 1 hr to eliminate these symptoms. When I awake at nite to go to the bathroom I struggle to walk taking what I call shuffle steps and having to support myself from time to time. Here is the phenomenon. If I happen to sleep well past the time the drug has worn off...a few hours I get up having no Parkinson's symptoms. I walk fine think clearly function almost normally until I take a dose of the drug. I assume I don't have any of the drug in me. The question is why when I am gradually coming off the effects of the drug do I have severe side affects but long after the drug has worn off little to no side affects. I have not tested how long I could go without taking drugs when this phenomenon occurs. Does this happen to anyone else and can you explain the signifcance.
Hi Dan,
Your experiences mirror mine. I have been taking Sinemet 100/25 for 6 years. Recently I experience distinct on/off periods, so to stay "on", I take 1 tab every 2.5 hrs. Since it takes 0.5 to 1 hr for Sinemet to take effect, I take it 0.5 hrs before the dose wears off. If I wait > 0.5 hrs, I undergo a wearing-off phase which includes lack of good control in my left foot when I walk (like stepping in high grass) and tense neck muscles.

The phenomenon you are experiencing is known as "sleep benefit". See thread (http://neurotalk.psychcentral.com/sh...=sleep+benefit) where I make some feeble attempts to explain.It is an interesting phenomenon and think it would be nice if researchers focused in on its mechanisms.
Deangreen is offline   Reply With QuoteReply With Quote
Old 04-06-2015, 03:32 PM #4
Dan Murphy Dan Murphy is offline
Junior Member
 
Join Date: Jun 2011
Location: penfield, ny
Posts: 42
10 yr Member
Dan Murphy Dan Murphy is offline
Junior Member
 
Join Date: Jun 2011
Location: penfield, ny
Posts: 42
10 yr Member
Default Thank You

Thank you both for your response nice to I am not alone when I have a question. Last nite I only took enough medication to get me to 11PM and I felt fine upon waking up much better than when I take medication thru the nite.
Dan Murphy is offline   Reply With QuoteReply With Quote
Old 04-07-2015, 12:58 AM #5
Betsy859 Betsy859 is offline
Junior Member
 
Join Date: Jul 2013
Location: Maryland
Posts: 38
10 yr Member
Betsy859 Betsy859 is offline
Junior Member
 
Join Date: Jul 2013
Location: Maryland
Posts: 38
10 yr Member
Default

Quote:
Originally Posted by Dan Murphy View Post
Thank you both for your response nice to I am not alone when I have a question. Last nite I only took enough medication to get me to 11PM and I felt fine upon waking up much better than when I take medication thru the nite.
Hi
I'm also experiencing a sleep benefit upon awakening. My meds are Azilect 1mg and Miraplex 1.5mg so no sinemet. If you google "assessment of sleep benefit in Parkinsons" you will find a few articles where this phenomenon has been researched and is trying to be understood. I found it interesting and it seemed to fit my experience with sleep benefit.

All the best,
Betsy
Betsy859 is offline   Reply With QuoteReply With Quote
Old 04-11-2015, 07:29 PM #6
dilmar's Avatar
dilmar dilmar is offline
Member
 
Join Date: Jan 2009
Posts: 104
15 yr Member
dilmar dilmar is offline
Member
dilmar's Avatar
 
Join Date: Jan 2009
Posts: 104
15 yr Member
Default

Quote:
Originally Posted by Dan Murphy View Post
I have been on carbidopa-levodopa 25-100 for 6 years. Up until 1 month ago I took 1 pill every 2 hours. A month ago I switched to Rytary 48.75MG -195MG 3 pills 3 times a day 4AM-12PM-8PM. Without getting into details of the switch I would like to jump to a strange phenomenon that occured while I was on each drug.
When the drug is wearing off I experience what will call withdrawal symptoms that verge on severe mild shaking, a system shut down, exhaustion. When I sense the beginning of the aforemetioned symptoms I take another dose of the medication and it takes a long time..up to 1 hr to eliminate these symptoms. When I awake at nite to go to the bathroom I struggle to walk taking what I call shuffle steps and having to support myself from time to time. Here is the phenomenon. If I happen to sleep well past the time the drug has worn off...a few hours I get up having no Parkinson's symptoms. I walk fine think clearly function almost normally until I take a dose of the drug. I assume I don't have any of the drug in me. The question is why when I am gradually coming off the effects of the drug do I have severe side affects but long after the drug has worn off little to no side affects. I have not tested how long I could go without taking drugs when this phenomenon occurs. Does this happen to anyone else and can you explain the signifcance.
Although your main question is about sleep benefit the whole picture you describe is very familiar to me. In particular i got severe shaking, tremor in overdrive, on my affected side which took ages to control with each medication dose. I have been on carb/lev about 7 years.
Recently I happened upon an aquaintance at an open air concert, my shakes persisted right through Sinead OConnor's hour, and they perturbed him enough to seek further information from his PD nurse. What she suggested was that i was treating the peak effects of my medication and so actually overdosing. I have cut back to 31/2 to 4 hours between doses. I had to ride out a week or so of feeling undermedicated but now feeling much better. I must add that I also started a low dose of propanolol and that would definitely have helped too.

The literature on dyskenesia is interesting, in particular the three types, off, peak dose and biphasic. It helped to make sense of it for me. What I thought was PD tremor i now think may have been partly drug induced tremor. Cutting back also improved my sleep.
http://www.hindawi.com/journals/pd/2012/745947/

I don't want to suggest this adjustment was easy, it wasnt and i should add that i also take selegiline 10mg and RopineroleXL 12mg both of which help to smooth out my regime.

Hope this info is useful.
__________________
"We don't see things as they are, we see them as we are."
Anais Nin.

Last edited by dilmar; 04-11-2015 at 08:14 PM.
dilmar is offline   Reply With QuoteReply With Quote
Reply


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
Subclavian Steal Phenomenon Horizontal One Thoracic Outlet Syndrome 0 11-24-2014 07:11 PM
The Placebo Phenomenon Bob Dawson Parkinson's Disease 2 01-29-2013 02:09 PM
Raynaud's Phenomenon mb3343 General Health Conditions & Rare Disorders 4 05-11-2010 12:56 AM


All times are GMT -5. The time now is 05:04 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.