Dyskinesia or Tremor??? I nod my head like saying “Yes” and side to side like saying “No”..............

[Chicafromchitown]

If I’m in front of people, the nodding starts slow but then increase speed until I can no longer control it, then when I’m by myself it stops. At first I thought it was because of the c/l since I take 4 tablets day, tried lowering doses, but even then I still have the nodding (but I don’t know if I gave it enough time) this is my meds routine: 1 1/2 tab at 1pm 1 1/2 at 4pm and 1 tab at 7pm I also take 2 pramipexole and 1 amantadine I will stop the latter since it’s not helping with the nodding. If someone is going through the same problem,, please share your experience. It’s getting to the point where I don’t want to go out or see people. It’s so embarrassing everyone looks at you like you’re on drugs or something, is there a medication for this if it turns out to be dyskinesia, I can no longer take this, I rather stay inside for the rest of my life than deal with this. I hope I get some responses thank you 🙏🏽

[GymBag]

You said "and 1 amantadine I will stop the latter since it’s not helping with the nodding. If someone is going through the same problem,, please share your experience."

Please discuss this with your Neroligist

I take 3 Amantadine a day with great success, instead of stopping the Amantadine , maybe you should be increasing it. If you do stop , I suspect the nodding may get worse. Your medical team should be consulted.

[Chicafromchitown in reply to GymBag]

Gymbag how long did it take to know amantadine was working?

[GymBag in reply to Chicafromchitown]

In one to two days

I guess I know what you mean I hesitate to order spaghetti in a restaurant and I bring my own napkins from home and I never have soup , but if someone is bothered by my dropping the meat ball on the floor that is just too bad but it will never stop me from going to restaurants.

My 6th grade teacher ( 60 years ago) was an elderly man , a 2nd world war veteran who suffered serious personal damage, widower, no children , a gentle sole, who knew the most amazing things about flowers , plants and nature and he made you want to know more also. He worked right up to age 65 . Our year was his last teaching . His head bobbed up and down when he spoke and his hands shook and when you looked around the class every child was mesmerized by the wonderful stories he was telling and every ones head bobbed up and down in time with his. A class room of bobble heads. He had a standard answer, when some one got up enough nerve to ask him why . "what bobbing" he would say and he never acknowledged the shaking. I dont either.

[justhavefun2 in reply to GymBag]

Thanks for relaying such a great story! Love it!!

[Chicafromchitown in reply to GymBag]

I wish I had his and your courage to not give a sh****t and not be embarrassed!! about looking like a bobble head. Thanks for sharing the story.

[ABDESSLAM1]

Don’t worry about people.go out and enjoy life.let them think what ever they want. Parkinson is a terrible disease .

[Chicafromchitown in reply to ABDESSLAM1]

Thank you 😊

[Seamus6 in reply to ABDESSLAM1]

I'm sure it's 'terrible' for some but for many it can well managed for many years - with concerted application. (diet , meds, exercise etc.)

[Chicafromchitown in reply to Seamus6]

Thank you 🙏🏽

[Johnboy46 in reply to ABDESSLAM1]

Totally agree. When I was first dx, I was self conscious of my right hand tremor. Some people thought it was the DTs, i.e; I was a drunk,one couple seeing me with my hand in my trousers pocket thought I was masterbating. After I very loudly told them I had PD and told them to F*** off, I realised that I couldn't care less what others think. I do wear a Parkinson's UK blue wristband, but most people don't know what it is. So Chicafromchitown all I can say is ignore the ignorant, and don't stay inside, get out and enjoy yourself. I'm off out to enjoy the sun right now.

[caitilin in reply to Johnboy46]

Johnboy46, I have been struggling with selfconsciousness when my tremors increase; but your post made me laugh out loud this morning.... Thank you for your attitude. It has given me a boost of confidence!

[Chicafromchitown in reply to Johnboy46]

😂😂😂 thanks you made my day

[johntPM]

One of the challenges that PD gives us is to keep levodopa, or equivalent levels, just right. This is made harder because levodopa/carbidopa has a short half-life, about 90 minutes, so things are changing throughout the day. Also, being stressed seems to burn up dopamine.

Try using the levodopa equivalent graphing app. You input data about all the doses and drugs that you take in a day and the app draws a graph showing how levels change with time.

parkinsonsmeasurement.org/t...

If the symptoms you describe are when your levels are low, you are likely to be under-medicated. Whereas, if the symptoms occur when your levels are high, you are likely to be over-medicated. Please see your doctor to discuss the results.

I know this is easier to write than to do, but keeping positive really does help. It took me years, but I have almost ceased to be embarrassed by my symptoms. I found group therapy very useful.

John

[Chicafromchitown in reply to johntPM]

How do I get the app?

[johntPM in reply to Chicafromchitown]

You run it directly from the web page that I gave you. There is nothing to install.

[Roland3]

Could it be anxiety induced? If so try Lorazepam. I fight anxiety when stressed. Makes me shake.

[Chicafromchitown in reply to Roland3]

Yes I do have anxiety and I take Lexapro. Thank you 😊

[TigerShark]

I can relate to the side-to-side, saying "no" head movement. On a recent video-based consult with Dr. Laurie Mischley she informed me the head movement was Dyskinesia and was confirmed by my movement disorder neurologist last week. This just started within the last four months during my 10th year since diagnosis. We are making a switch from Carbidopa/Levodopa IR (instant release) to Carbidopa/Levodopa ER (extended-release) while focusing on diet (no protein during breakfast and lunch, only dinner, as well as DHA Fish Oil and Theracurmin HP (bioavailable curcumin). It is too early to determine effectiveness.

In terms of the anxiety, I too have moments of embarrassment especially when my right leg wildly flails involuntarily kicking people and furniture, accidentally of course. For me, a strategy that works is to focus on other people. It's amazing how much of a difference we make to other people. Next time you walk past people just flash them a smile and watch the impact it has on people, not all, but some. Or next time you are in the checkout register, ask the person at the register how their day is? Watch the expression on their face. I believe God made us to serve Him and serve others It works for me most of the time when I place my focus on others instead of myself. I hope this helps you.

Mark

[Chicafromchitown in reply to TigerShark]

TigerShark

Thank you for sharing your experience.

I am also on my 10th year since diagnosis, I have been thinking for a while about switching to C/L ER since a lot of people in this forum are on it, I will discuss with my Neurologist on my next visit.

[ktbate]

Hi Chica, I also have the nodding and the "no-ing". Dyskinesia is caused by C/L. I tried amantadine with no help. I cut back the C/L no change. I do know that my symptoms increase when I think I'm being judged or stared at. However after the last year of embarrassing uncontrolled movements mostly in my neck and head and tremors for 9 yrs.in my arms and legs I'm having DBS surgery at Mayo Clinic. I'm having it done while asleep and will have the newer DBS (Boston Scientific device) implanted. if everything goes well (94% does) I will be free of tremor, will take less C/L and thus will eliminate Dyskinesia for the most part. Bradykinesia (slowness), and stiffness should be reduced too.. I also am aware of possible side effects as with any surgery.

I'm telling you this because there is help out there. If you decide to do DBS one day it is covered by most insurances, with many doctors that do it in Chicago.. It takes months to do all the testing to see if you are a good candidate. I'm a little scared but can't wait to have it done. I do go out and say to myself, "I don't know these people, what do I care?" My friends and family tell me not to worry -- it doesn't bother them. I have relied on PD meds, good nutrition, and exercise, meditation, etc., etc., which is the best you can do to fight this. DBS is my hope..... unless there is a cure of course!!!!!!!! Best of luck to you.

[Chicafromchitown in reply to ktbate]

Thank you and good luck to you 🙏🏽

Do you live in Chicago?

[ktbate in reply to Chicafromchitown]

Chica, I live in Madison. Wi. Have you considered DBS?

[Chicafromchitown in reply to ktbate]

Not really, but please keep me posted after your surgery, I will keep you in my prayers.

[justhavefun2]

Hi Chica! I have the “no’s” on occasion in the evenings while I watch tv. I mentioned it to my neurologist and she gave it a name other than dyskinesia, but I don’t remember what she called it. She didn’t seem at all concerned. Maybe it will come in handy for pushy salespeople who never hear the first three no’s! Hey, sometimes you have to laugh or we might cry. All the best to you!

[Chicafromchitown in reply to justhavefun2]

I’ll take laughing 😂 thank you