WHAT DO "OFF" PERIODS FEEL LIKE?

[RS313]

Sometimes i am not sure if i have Dyskenia or if i am having Off times?

Can anyone explain what dyskenesia looks like and what symptoms i may have on an off time?

tty

[laglag]

When I have Dsykensia my feet kind of move around, sometimes my body and/or head does the same. It's like what MJF does, but mine is not as severe. When I'm "off", my movement gets really slow and I feel fatigued. I can't take a shower, stir things, button things, clean house, get things out of my purse, etc. It's not really that I "can't" do those things but it takes a lot longer and it then gets frustrating, which in turn causes me to get fatigued.

[RS313 in reply to laglag]

Ty Laglag

i am still new at this Parkinsons thing and sometimes i am not sure what these feelings are.I have switched to the Er C/L and still have some dyskenesia in my foot and arm. i am not on a large dose so i cant understand why i am getting this so soon in my disease.

[laglag in reply to RS313]

I'm on a low dose of C/L (4 per day) also. I've had a small amount of dyskensia for several yrs. My doctor gave me Amantadine to help and it works to some degree. All of us that have had PD for awhile know there's no rhyme nor reason with how PD effects each one of us.

[Angora12 in reply to laglag]

read the book mucuna versus parkinson treatment with natural levodopa by Rafael Gonzalez can get it through Amazon. it does not have dyskensia side effects.

[laglag in reply to Angora12]

I've been on C/L for at least 8 yrs. Can I take mucuna AND C/L and/ or wean off the C/L without having ill effects?

[Angora12 in reply to laglag]

see the book I mentioned in my other reply and yes you can take them together you just have to adjust back the volume of C/L as Muncuna is levadpoa with out the carb dopa. does the same. Highly recommend reading the book you can get it on kindle through amazon or paper back just make sure you order the english version.

[bita94 in reply to Angora12]

o askinte:

Mucuna cu L-Dopa de pe Amazon ? dar de la ce firma, ce gramaj si cit se ia pe z.Incepi prin a lua in paralel cu tratamentul prescris de neurolog si pe parcurs diminuezi si ramai doar cu MucunaMa interesez pt sotul meu cu parkinson din 2007.M-ar ajuta un raspuns pt orientareMultumesc

[Angora12 in reply to RS313]

try mucuna puriens it helps my husband uses the zandu zandopa and in 20 mins after taking it he can feel the effect and the shaking and jerking stops.

[canuckchief in reply to RS313]

Ask your Neuro about Amantadine

[Bailey_Texas]

Good evening Robyns

youtube.com/watch?v=t_NKRS8...(Not working as expected?)

This is a video of someone with Dyskinesia. It appears to be any form involuntary movement. I have Dyskinesia a couple of times a month. When i first had Dyskinesia i thought it was my Parkinson's (PD) and it was so bad i went to the er. Now i just ride it out. It has lasted for hours but can just last a few minutes. Mine can be painful and i have had soreness the next day. My Dyskinesia is the result of too much carbidopa levodopa (c/l) in my body.

I now have a small amount of Dyskinesia when i am sitting around. I just rock back and forth or wring my hands if i stop taking c/l that stops too.

For "off times" to me are any time my PD symptoms prevent me from doing anything or make it harder than it should be.

I take a lot of carbidopa levodopa . 2 25/100 and 1 50/200 every 4 hours 24/7 and 2 6mg Requip 24 hour release 1 time a day. That is 600 pills a month . I was taking 3 25/100 but cut back because i was having too much Dyskinesia.

[RS313 in reply to Bailey_Texas]

Bailey-texas

I am finding that if i take the IR c/l i have dyskenesia and now that i am on the CR i feel stiff like and have some pain and rigidity more my coworkers have said i look stiff i hate to keep asking my Movement Dr to keep switching my meds.this is so frustrating. i just wish i knew the right dose to take

[Bailey_Texas in reply to RS313]

Good to hear from you.

How much c/l are you taking and how often. Do you have the same stiffness all the time or does it vary. If you don't have dyskenesia with the cr then i would ask your DR. to slowly increase the dose until you get relief from you stiffness.

When you take ir c/l is the dyskenesia so bad you can not stand it or is it just annoying. If you get relief using it and the dyskenesia is just annoying i would deal with it and see if the dyskenesia goes away in time. When i first started Requip and C/L i had bad dyskenesia but i no longer have much. By the way a combination of Requip and C/l works for me.

[RS313 in reply to Bailey_Texas]

Bailey-texas

I take 1/2 c/l ir 25/100 in the morning first thing then i take the CR 25/100 the next 2 doses and yea i still have a small amount of dyskenesia with it as well and the dyskenesia i had from the IR wasnt bad but yes annoying and uncomfortable. I am so afraid to get it bad though because it looks scary and i know it is doesnt go away after you get it usually. I havent been on meds long so i wonder why i got it already and i sure hope i can get on track because i am still in early stages and dont want to get dyskenesia this early in the parkie game

[Bailey_Texas in reply to RS313]

If you take too much c/l it will cause dyskenesia. The good news is dyskenesia caused by c/l is not permanent and goes away. C/L does not cause long term dyskenesia. There was study done with people who had no access to any pd drugs and the incident of dyskenesia in later stages was the same as people who took c/l long term.

So don't let the possibility of getting dyskenesia worry you it not caused by your meds. Over the last 12 years i have built up a large tolerance for my drugs and they do not cause hardly any dyskeneesia. I would keep taking the meds deal with the side effects and see if the dyskenesia lessens over time.

[Smalltownguy]

Your questions reminds me...there was a time when I had the same question. What does "off" mean? I learned, probably like most all of us have, or will. There was a time where I could start to feel myself starting to get fatigued, take a sinemet, and in about 20 minutes feel my energy back. Those were the good ol' days. Then, there came the time where I'd take my sinemet, and 2 hours later start quickly dropping into fatigue, stiffness, slow of movement, brain fog...for 2 hours until I took my next dose (at that time on a four hour cycle). Sinement was loosing it's effectiveness and at the same time I started experiencing a side effect of sinemet usage over time...dyskinesia. Thank God, in my case, for DBS. I was taking 13 sinimet/stalevo a day. Now, I take 4 Rytary a day.

[RS313 in reply to Smalltownguy]

smalltownguy

it seems like from reading your reply you got the DBS? and it worked for you? i am so happy to know there are things out there to help when it gets bad and i sure love the community of people on here i have gotten so much knowledge here!

[Smalltownguy in reply to RS313]

DBS has been literally miraculous for me. Had to turn stimulators (planted in my chest) off 6 months ago for 45 minutes for a MRI of my back. It was unbelievable...where the disease has progressed. I could not move a muscle on my right side and barely move my left hand and arm to turn the stimulators back on. I turned into a block of granite. And, this was on my normal meds!

I know we are all unique....different symptoms, different rate of progression, etc. Having said that, it pays to research every option available to you.

[Bailey_Texas in reply to Smalltownguy]

Hello Smalltownguy

The old way of thinking is that Sineme caused dyskenesia when used long term. But that has been proven to be wrong. See my post just above. Also Sinemet does not stop working as good. What happens is our PD is progressing and it takes more Sinemet to control our symptoms but if we take enough to help it causes too many side effects. The meds work the same it is us who change.

I take a lot of carbidopa levodopa . 2 25/100 and 1 50/200 every 4 hours 24/7 and 2 6mg Requip 24 hour release 1 time a day. That is 600 pills a month . I was taking 3 25/100 but cut back because i was having too much Dyskinesia.

For me give me the pills not dbs. Some one cutting my brain will be the last thing i do.

[Smalltownguy in reply to Bailey_Texas]

Hey, Bailey, thanks for the update on dyskinesia and sinemet. I had to laugh at your last sentence. Funny, I said something similar..."I've got to really be hurting bad before I let them go into my head". After i had a nightmare on Requip with personality shift / compulsive behavior, ...I was ready for DBS.

[JohnPepper]

Dyskinesia is unwanted and uncontrollable movement of arms, legs and head. You will know when you get those movement, which are not painful, but are unsightly and embarrassing.

"Off" times are when the medication is no longer giving you more dopamine and you run out of the ability to move, although you can move but rather slowly.

[RS313 in reply to JohnPepper]

ty Johnpepper!

I watched a documentary about you the other day.I told my husband i know that guy..well kinda lol

[JohnPepper in reply to RS313]

Do any of us really know anybody else?

[jujulini]

there are also two types of dyskinesias---

peak dose dyskinesias - which are when the c/l dose peaks, about in the middle between when you took the dose, and when you need your next dose. these are caused by long term use of c/l or high doses of c/l.

diphasic dyskinesias - occur just prior to the c/l dose ending. these dyskinesias are quite severe & exhausting. they are less common than the peak dose, and are eliminated with taking the next c/l dose

i have the diphasic type, and usually i take my dose prior to them starting. but sometimes i will feel them coming on, and i know about what time it will be before i even look at the clock.

[etterus in reply to jujulini]

Excellent descriptions. Do you have tremors or are you PIGD -postural instability gait disorder?

[RS313 in reply to etterus]

yes i have slight tremors and gate issues which have been resolved pretty much by my meds

[RS313 in reply to jujulini]

jujulini

I am not sure if i am either of these descriptions.. my dyskenesia is usually about an hour after my dose when i get it and it lasts different amounts of time and some days i get it and some i only have it barely.i have only been on meds for 8 months and got it probably 3-4th month into taking meds.i havent been on meds longterm so it is weird that i even have it, puzzling?

[ion_ion in reply to RS313]

When were you diagnosed? Depends of what stage you are.

[RS313 in reply to ion_ion]

June 2017

[christymw]

My experience taking the continued or extended release form of c/l as well the immediate release is that the levels of levodopa tend to build and then the dyskinesia roller coaster starts. For example if I take an IR in the morning and then for my next dose I take the CR, even 4 hours later I turn into the human pin ball! My neuro/movement specialist refers to the CR form as "crummy relief" because it's effectiveness is so unpredictable. Even though the half life of c/l is short, when the two forms are staggered in a dosing schedule, the levels seem to build and the release of the drug as it is metabolized becomes unpredictable. I now only rarely take the CR and if I do it's only at night.

[bita94]

voi incerca sa imbunatatesc profilul dar nu stiu cum sa completez formularul....ma interesez pt sotul meu diagnosticat cu parkinson din 2007 si uneori completarea formularului pt profil ma pune in incurcatura dar pina la urma voi reusi principalul e ca v-am descoperit ...multumesc

[jeeves19 in reply to bita94]

Eh?

[Farooqji in reply to jeeves19]

English translation :

I'm trying to improve the profile but I do not know how to fill in the form .... I'm interested in my spouse diagnosed with Parkinson's in 2007 and sometimes filling out the profile form is messing me up, but after all, I succeeded in finding out. ..thank you