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Akathesia, is this present in your off?

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I have it in my OFF and ON. I consider it to be mild. When standing,  I tend to sway back and forth. Thanks, I never had a name for it. How bad are your symptoms?

Dave

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I just had an "a ha" moment.  I never tied my actions into a symptom until I just looked up the word akathesia.  And YES I do have this.  Sometimes it is restlessness and agitation but at other times it's like a burst of welcome energy.  When it happens its in the evening long after my last dose of the day.  It's a real point of contention between me and my husband.  I just told him that my evening antics have a name and he said "you mean at night when I'm all used up and you're going off like a chain saw?"   Anyway, even tho I didn't know it had a name I combat it with: wine, warm milk, melatonin and a good book.   I noticed you take Valerian Root.  If I find myself still awake late into the night I will also take that.  I think it complements the melatonin. 

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Thank you all for your replies.

Even after 22 years, I still find it interesting how different we all can be and to what degree.

I’M DISMAYED THAT DOC’S RARLEY DISCUSS THIS SYMPTOM WITH THEIR PATIENTS, ESPECIALLY THOSE OF US experiencing these disabling sx. It’s an area they do not fully understand or do not want to.

Here is how I found out I have SEVERE AKATHISIA.

A couple of weeks ago I went to my Neuro appt. in my off state. This was the first time he had seen me in my off.

During my prior visits, my leg tremors were not present, or barely, had some dyskinesia. My walk has always been a quick pace.  His comments have been: "you respond incredibly well to Levodopa! in small dosages" but frequent, as I can become over med easy.

My complaint has been, "how do I go from almost no sx, to such severe leg to full body tremors, nothing in between.. or (quaking) that consumes my entire body. So bad that I cannot sit, lie or even stand still. During this 3 ½ hr off time appt. several attemps were made to take my BP,  but I couldn’t stand still long enough. As I started to return to on state; they were able to get a very high BP and high pulse. Sweat drips from my face, I can hardly catch my breath. I have no choice but to walk/pace, this is the only way I can tolerate it or get some relief. I lost 2 lbs. in the 3 ½ hours I was there.

This has been my off for the last for 2 + years. Needless to say, I hate OFF time!!

Neuro's summary following my visit; SEVERE Akathesia...He is the first doc, out of 5, (4 at one time to determine what I was experiencing, and none reported this) that put a name to my debilitating sx.

I must say, I was alarmed by this, but yet releived that finally I knew what I am experiencing.

I still have many questions for him; will it always be my off, does akathesia differ in pwp than those w/o PD and many more…..

My research on Akathisia is; it may or may not be a component of PD, whether or not that component is from PD meds remains uncertain. It can also be from other medications, the “older anti-psychotic drugs and others. I have never been on those. However, I was on Clonazepam .5mg for 9 years. Tapered off 21/2 yrs. ago. With months of withdrawal..however, it can be used to help akathesia, but not long term as it has it’s own dependency issues. So more questions for him on that as well.

PD...always a challenge~

 

 


 

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On 9/30/2017 at 3:06 PM, DaveN said:

I have it in my OFF and ON. I consider it to be mild. When standing,  I tend to sway back and forth. Thanks, I never had a name for it. How bad are your symptoms?

Dave

I have this swaying when I stand. It started the second week of sinemet when I went up to a whole tablet twice a day. Sometimes it got quite wild- I was practically bowing. Also I will bow and my leg will kick out when I’m sitting. I thought it was dyskinesia. Then I thought it might have been because I have bipolar and the dopamine does something to me. I’ve had akathesia before and it was an awful feeling of wanting to escape my own skin and I couldn’t stop moving. 

I stopped taking the sinemet five days and I still rock a very little bit when I stand. I am so happy to hear of other people who sway from sinemet. I was afraid to keep taking it but if I’m not odd for doing this then I will go back on. 

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Is the swaying at stance called Akathesia?If so I think I do experience this a lot after fast walking exercise or jogging and stopping.I have always been thinking that sinemet was worsening my balance problems.I have posted this on ask the Doctor's forum to see if Dr Okun has an insight as to the solution to this problem.I hope someone can help.

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My balance has declined slightly since adding sinemet to my drug cocktail.  But I have no way of knowing whether sinemet is a cause or if time and the natural advancement of PD are responsible.

J

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This was a real "aha" moment for me.  I have had trouble with my right leg wanting to be elevated when I am standing still for a couple of years   It is worse now and noticeable to others.  I will be standing still, usually in the evening, and have to flex my hip and elevate my right leg.  I am finding it happens more and more during the day now, and no longer find it a wearing off phenomenon.  My MDS initially  thought it might be a form of dyskinesia, but I now think it is akathisia,  and will bring it up with him at my next visit in May.  There is no pain associated with this but I cannot seem to control what my leg is doing.  I also have found that in the evenings I have trouble keeping my right leg still when sitting, and keep crossing and uncrossing my legs.  In my case, I believe it is a part of progression of the PD, as I have noticed it increasing over a period of time when my Rytary dose has been steady.   As always, you have helped me sort out something that has been puzzling for a while.  Thanks, everyone!

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3 hours ago, otolorin said:

Is the swaying at stance called Akathesia?If so I think I do experience this a lot after fast walking exercise or jogging and stopping.I have always been thinking that sinemet was worsening my balance problems.I have posted this on ask the Doctor's forum to see if Dr Okun has an insight as to the solution to this problem.I hope someone can help.

One longtime member said the swaying is an early form of or precursor to dyskinesia.  If so it’s related to how far advanced our PD is as much as the medication if I understand what my PD physical therapist said.

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Thanks Sherrie,if the swaying is a precursor to dyskinesia,I bet this is most dreaded side effect of C/L and would also bring it up during my next MDS visit.To anyone who is treating dyskinesia,or has prevented it,what is the solution?Please provide your insight.

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Thanks again Sherrie,it is more obvious during my "on"when standing.And during my "off" after fast walking or jogging exercise.

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The swaying I experience can occur when I'm washing dishes, standing in line at the store. I do believe this is a direct result of long time use of C/L. I would say dyskinesia.

Akathisia for me is having to walk non-stop, & leg stretching, during my off time to relieve the pain in my shins. My tremors are lower legs. This also includes, rapid pulse, elevated BP, which is normally low and sweating. Many times I can hardly take a deep breath.

 I resemble someone experiencing the DT's... 

Gotta luv these drugs...

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For me this swaying could not be dyskinesia due to long-term use of medication because I got it the first day I started my full dose after one week of half a dose. I’ve only had a tremor for four years. I’ve had balance problems for two years. This past year was the first year that I started being stiff and slow. I’ve only been trying PD medication for a couple months.

Also I understand that akathisia can affect people differently.  I had akathisia from taking a pill called Latuda. It was not at all like the “mandatory “ swaying I experience now. It was a feeling of intense misery and anxiety making me feel like I needed to move, I needed to change positions, I needed to go anywhere to do anything to get away, to crawl out of my skin to get away from my body. In the end I took the latuda right before bed so I wouldn’t experience it. 

 The swaying  doesn’t come with any anxiety feeling and if I tap my foot it doesn’t happen. It’s as if tapping satisfies whatever need the swaying was for.

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Sherrie, your description matches my experience fairly closely.  The swaying is not related to emotions; it is just motion that the body seems to need to perform.  Your calling it "mandatory" captures the sensation exactly.  My dyskinesia did not begin as soon as yours, however.  I think I had taken carb/levo nearly three years before I noticed any swaying.  I'm going to try that foot-tapping next time!

J

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Sherrie,

I’ll have to try the tapping next time also. Most of the time I’m not even aware of the swaying until my wife tells me about it.

Dave

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I agree, I think the swaying is "mandatory". When I focus and think about every movement before I move, I can stop it, but it is so overwhelmingly just there, I can't sustain the non sway focus for too long.

DG

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Hi everyone,Doc Okun said,the swaying may not be dyskinesia if you only experience it while standing.Also,he said if it is dyskinesia ,it will also occur while sitting.I also have been on Sinemet only for a year and I started having this worsening swaying problem,immediately when I commenced taking Sinemet.Doc Okun also said,Sinemet can cause some balance problems too.

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Another swayer posted that taking 1/4 tab every hour and a half controlled swaying. I tried it yesterday but every two hours because, frankly, the math was easier. I didn’t have to stand much, but when I did,the swaying was mild. It was strongest 20 minutes after a dose and also right before a dose. I had good symptom control all day. 

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I don't "sway" or rock when seated, there is still a movement tho,  it goes to my feet and doesn't include my upper body. This may be a me thing because my tremors are in the legs, not arms.

Thanks Sherrie for the info.

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