Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Gardener

Evening restlessness

Recommended Posts

I'm having a combination of exhaustion/restlessness in the evening and wonder if others feel this as well.  It's difficult at times to sit still in a chair yet I'm too tired to do anything else.  It continues when I go to bed for the first hour or more where I toss and turn unable to find a comfortable position.  This has been slowly building into a problem especially when our kids are visiting.  I'm wondering if this is a symptom of too much Levodopa or just progression.  Any thoughts?  Gardener

Share this post


Link to post
Share on other sites

Gardener,

I occasionally have this problem here and there. For me it’s associated with wearing off.  I take Rytary and when I’m low on dopamine, I experience wearing off dyskinesia. You should touch base with your doctor to see what he thinks.

Dave

Share this post


Link to post
Share on other sites

Thanks, Dave.  I will bring it up at my next appointment.  The restlessness is always in the evening.  When I wakeup, before meds,  I'm very calm and don't feel like moving at all until the Sinemet kicks in.  During the day I function fairly normal and try to keep moving.   What kind of wearing off dyskinesia do you experience?  Gardener

Share this post


Link to post
Share on other sites

Gardener,

Usually, it shows up in my right hand. My hand will have a mind of its own. It’ll open and close and basically move on its own. It’s sorta of like having restless leg syndrome in my hand. The other day it hit me while driving on a road trip where it primarily was in my shoulders. It’s mostly annoying when it happens. My doctor witnessed it first hand and said it was wearing off dyskinesia. That type of dyskinesia is not common, so yay I’m special.

Dave

Share this post


Link to post
Share on other sites

Hi Dave

I get shoulder jerks more so when Im standing still after walking some.Ive had anywhere from wearing off to psychiatric depending on their mood.It should be addressed in a professional way not shrugged off.One good thing these movements went away completly after changing brands of C/L.Sleep apnea or lack of good sleep also play into this problem.

Now I take hust 2 doses down from 4.If it was wearing off why is worse now after I took my 2 doses?

I also can get mine going with any finemotor movement mostly left side like pill rolling

Share this post


Link to post
Share on other sites

Gardner,

My husband is very restless in the evening.  If we try to go to dinner, he can't sit still after he finishes eating and usually gets up to walk around.  It makes it really hard to go out.  At home, he gets up and starts pacing.  I think I've decided it is a wearing off issue, but I'm not really sure.  I'm anxious to hear what your doc says.

Share this post


Link to post
Share on other sites

Hi jsaltsfaver -

Your husband's restlessness describes my own.  I can't sit at a table after eating either.  The really curious part of this is that it primarily occurs in the evening.  I'll bring it up at my next appt. but like most of these issues, my MDS doesn't provide an explanation.  If she can't observe she dismisses it.  Thanks to all who responded.  Gardener

Share this post


Link to post
Share on other sites
10 hours ago, Gardener said:

Hi jsaltsfaver -

Your husband's restlessness describes my own.  I can't sit at a table after eating either.  The really curious part of this is that it primarily occurs in the evening.  I'll bring it up at my next appt. but like most of these issues, my MDS doesn't provide an explanation.  If she can't observe she dismisses it.  Thanks to all who responded.  Gardener

I know what you mean -- we haven't been given a great explanation either.  Our MDS initially thought it was too much dopamine, but we've found that the restlessness (mostly pacing and not being able to sit down) stops about an hour after his levodopa dose.  The restlessness is almost an anxiety issue that seems to be alleviated by a very small amount of sinemet.  My husband only does this after dinner, not after breakfast or lunch.  

Share this post


Link to post
Share on other sites

This sounds like Restless Legs Syndrome (RLS) to me, which frequently accompanies PD. I have it & have not found a fix. From what I can tell from my doctors & online research, there is no fix. They don't understand what causes it nor how to treat it. It's a miserable condition. Comes on end of day or at bedtime, just when you want to relax, and nothing helps except moving & that's the last thing you want to do then.

Share this post


Link to post
Share on other sites

Gardener, you describe me in the evening to a t.  I just want to sit and finish watching a tv show but no way!  I have to get up and pace back and forth. Too many nights when I get in to bed I am so tired but my legs are still going. How many nights have I said to myself there, relax, think relax, only to move my legs around once again.  Under the blankets,out of the blankets.  Finally resolved by deep tiredness which overrides restless or I get out of bed and putter around the house. Thankfully my wife can sleep through all of this.   It all hinges on my drugs and timing at bedtime.,and how I feel in terms of tiredness when I hit that bed.  Always at night.

Share this post


Link to post
Share on other sites

Not sure this is the same thing, but I sometimes wake up with restlessness that is throughout my whole-body--like having restless leg thing, but all muscles in my body feel like they need to be tensed.  Need to tense all muscles, and can't stop.   Sinemet dose is usually due or overdue, and about 10-15 minutes after taking it, the restlessness stops.

Share this post


Link to post
Share on other sites

Although I said above that I haven't found a fix, here's what helps my RLS somewhat, sometimes. My neurologist prescribed Requip for RLS, which sometimes helps. One pill half an hour before bedtime, 1/2 pill late afternoon, which seems to also make me sleepy. Also, I sit on my large exercise ball rather than a stationary chair while watching TV so that I can roll back & forth & keep in motion, or sit on my walker so I can roll around, back & forth, do  some stretches with it. If  you must move, make  it as easy & as much fun as possible. Hope this helps someone.

  • Thanks 1

Share this post


Link to post
Share on other sites

Hi, jb!  Good to see you here and good to know it's a helpful thread..

Just FYI for those experiencing the restless leg/body issues, here are some sites I found this morning that may be of interest.  There are a lot of people struggling with this issue.

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Restless-Legs-Syndrome-Fact-Sheet#7

https://www.youtube.com/watch?v=g90U6gPSWEs

https://healthunlocked.com/rlsuk/posts/269742/does-any-one-else-suffer-from-rls-all-over-their-body

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Restless-Legs-Syndrome-Fact-Sheet

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×