My paroxysmal dyskinesia has been getting better for nearly three years. It was possibly caused by being on low dose amitriptyline for many years for fibro, or some other possible non-drug reasons. Exercise is one thing that has always made it bad.
Anyway, the spasms in my legs were frequent and severe, and moderate in my speech. The doctors here saw it happen repeatedly for several years but did not know what it was, and it kept getting worse. Finally I went off the amitrip. and also started the first of some meds for COPD (which the doctor had found in a test a few years earlier and didn't tell me). From that point on I very gradually improved with a lot of work at increasing walking strength and endurance, and do better enough finally that I was able to trudge in the one-mile Turkey Trot this year..

Linda B. I'm sorry but can I assume you have pd? if you don't -good for you- but yours sounds different and i don't see any pd meds listed in your post.

I must share this because now I'm convinced that sinemet alone with amantadine and nortriptyline (both help dyskinesia and they balance the neuro transmitters)is a good combination.

i'll be saying this till you are sick of it, but we are also lacking norapinephrine and gaba. ....anxiety is a symptom for me now that i must treat with xanax, nortriptyline is a multipurpose drug and I don't know the difference between nortriptyline and atriptyline i'll have to look that up. But nortriptyline is also a nerve painkiller and an antipressant with anticholinergic properties so it helps to balance acertycholine, norapinephrine and maybe more of the transmitters. i take4omg of nortrip. a day 4 times at 10 mg each.i don't always need the xanax till late afternoon but take it earlier when i feel anxious in the pit of my stomach. I take 2 amantadine per day and have for years it does not stop working for everyone.

the only parkinson med i take is generic levodopa/carbidopa and i take 2 25/100s every two hours but it really rarely extends too far into the evening . i take the lowest dose of xanax, 0.05 mg - i could take all 3 at once and still be safe and frequently do not need the third one. i think it also helps dyskinesia and just the tightness of being rigid.

yesterday was very hectic and i spoke at the brevard pd assoc. about the wpc and our book. this group had never heard of gdnf, they are not online, most are older but there are some in their forties. so i had much to share with them and they called me to come and speak after hearing about my trip and our book from a teacher friend who lost her husband to pd.

i asked my friend to tell me honestly. and she would anyway, if i looked at all dyskinetic, i said, did i look at all like mike fox? she said no. i looked like a normal person and others there didn't know i had it either.i've been to a couple meetings and may try to attend more. but they are behind and not online . one man said we have to be careful not to scare away the newly diagnosed. it wasn't directed at me, but it is a problem in many towns = older people are not of the same mind and many look grumpy, lol.

it was their christmas party too so we had to stop and get another friend who had tons of food so we were loading, unloading, getting set up, all of these things are pretty difficult for me to pull off but i have faithful teacher friends without pd and they helped me set up the equipment. so i took a xanax, which may knock a person out but for me it takes off the edge, another good drug for anxiety and possble to keep at a dosage that is less addictive.

by the time igot there i was feeling pretty stressed just because i was so busy and even with help had so much to think about doing; this lack of executive function is serious business with more advanced -like i said in another post i make a great couch potato.

but i did not look parkinsonian. ive had it probably over 22 years not and i am not dyskinetic. when i arrived at the meeting i had taken 8 25/100s and it was only noon. no dyskinesia.

i do not have a tremor, so i 've got to be some subtype but what does it mean? are dopamine agonists not for everyone? they cause dyskinesia, gambling, sexual and other problems. I got by at first with eldepryl and mirapex but i felt the best pre sinemet on cogentin, an aticholinergic. had to stop due to brain fog. as soon as sinemet was added to the mix - with requip by then, i became dyskinetic right away and been blaming sinemet all along. For now i'm convinced that high doses of sinemet, while it does come with side effects, does not make you crazy. it's the drugs you take with it.

I wonder how many of us are taking the right meds? This is something we can control to a certain extent. so I would really like to hear from any of you who are similar.

each of us should map out our protcol and see what emerges.

I have been symptomatic since 1991. In 1994 I started taking a muscle relaxant. In 1996 I took sinemet (brand name) 25/100 4 x day for a month with no effect. In 1998 I was restarted on sinemet again with improvement within the first 20 minutes of my first dose. I added on a very low dose of mirapex in 2000. By 2004 II had fullblown OCD spending sprees with increased mirapex. It was like being on speed fore me. My sinemet was minimal - I'd take a .25 -.5 tab once or twice a day. mirapex was weaned off to requip and then dose was lowered to current 2 mg at night time for RLS. My max dose of sinemet was 5 X 25/100. Because of severe dystonia in my left foot causing me to break it 4 times in 4 years, I had one sided DBS in 2006 and immediately cut my sinemet. I am now on 2-3 sinemets with comtan per day and 2 mg of requip at bedtime for RLS. Clonazapam 1 mg at bedtime for dystonia. Never had dyskinesia or tremor. Amantidine did nothing for me. Elavil made me evil every afternoon. I have never tried any of the other PD adjunct drugs preferring to stick to sinemet , avoid DA as much as possible. Prefer diet, sleep and exercise as adjuncts to my sinemet/comtan . MY MDS says I look great and am his poster child for recomending exercise to all his PD patients. Ii have occasional momentary freezing and stumble when I walk but other than that I feel and look great. Your milage may vary but I am getting great value for my buck.

TG

Greetings,


I've been taking carb/levo generic regular and then ER for three years and 3 months respectively. I've never taken an agonist of any kind until today (requip). I definitely had dyskenesias from regular sinement. At times, it was significant (too wired) and at other times no problem.

Any tips, words of wisdom, on starting my first day on Requip? Taking 2 mg once per day along with 1 reg c/l and 1 ER c/l.

Cheers,

Hi oneguy,

i've been meaning to reply sooner but there are so many good discussions, some on the intense side; this forum is run by malfunctioning hardware . possibly from a virus. it manifests itself in so many ways; I'm hoping you have a sense of humor.

my point earlier in this thread is that a fairly recent med change has led me to conclude about myself and others have thought it too,that l-dopa in anyother form than regular 25/100s, causes dyskinesia, but after having pd for 20 + years i was surprised and pleased to see that i could actually control most of it unless i 'm out later and have to take even more.

i have said several times that i take 2 25/100 every two hours. i don't always remember doses but that is what my body needs now. i take 2 amantadine. i'll ofer up some evidence and if all goes well LLinda H. and Peg may visit this winter - i sure hope it's warmer down here! ..and they will be my qualified witnesses.

Today's witness is my husband after a busy day of Christmas shopping. After taking 10 sinemet beginning' at 6:15. i emphasized emphatically that i had to be accurate in sayihg something like this in a public forum.

Am i dyskinetic? At anytime was I dyskinetic? He said no not at all but you still get your bird beak mouth thing . But you don't have it right now.


ah my point being that even the ER -which i guess is extended release? made me dyskinetic. i would expect , if you are like me, you to be dyskinetic on both requip and regular sinemet and even more so if you add ER or as it is called here-CR. i am only taking a dosage that i can control the best.

let us know? - you don't have to go through all that expermentation with agonists necessarily. it's worth avoiding some true personality changes and reckless behaviors altho the same warning comes with with sinemet now with no fanfare or attention drawn to it. Like they do with congressional bills slip it on in there and don't tell.

i am looking for people who can conclude that theyare not dyskinetic on l dopa? It might be possible that it takes more sinemet to get out of dyskinesia.

And amantadine works.

Paula,

I too have wondered if more sinemet could get past the dyskinesia. I have tried increasing it slowly but the dyskinesia seems to get worse. I have often wondered if there is a threshold I have to reach before the dyskinesia disappears. You posted a whle back that you had alot of dyskinesia. What changes did you make to get to where you are now? I can't take more than 1 amantadine a day or my eyes get very painful and scratchy. My dyskinesia seems to increase throughout the day and the sinemet lasts less time. I take my last sinemt at 5:00. It lasts until 6:30 - 7:00 and then I have dyskinesia for 1/2 to 1 hr followed by extreme tremor but about 9:00 I seem to have little tremor and can function almost normally. Think after Christmas will experiment a bit more and see if an increase can help me. My MDS once commented that he felt if I could past the dose I was on the dyskinesia might diminish. I have always been of the mindset that less is better. Maybe that is not the case for me.

Sunflower

Are you only taking the regular sinemet or CR? i dropped every thing else, including comtan, CR, stalevo. I take two amantadine but i also added nortriptyline...brand name pamelor. It boosts norepinephrine uptake [we are also lacking these cells annd they don't include it often in defining parkinson's]. Some think the disappearance of norepinephrine transmitter cells is extremely important with pd so i hope someone is paying attention to the transmitters , whch seem to me. on the surface appear to have the potential for defining pd and the biomarkers that say it all. If we deplete our transmitters there will be inflammation, all kinds of motor abnormalities and mental illness. It has to become at some point auto immune.

anyway some consider norapinephrine to be neuroprotective but i think it also helps dyskinesia;does lack of norapinephrine contribute to a cascade of dysfunction by gradually disappearing like dopamine? pamelor has anticholinergic properties and i would suggest you ask you doctor about anticholinergics and Pamelor especially. It lowers actetylcholine, a neurotransmitter that is responsible for smooth muscle movements and it gets too out of balance. It also makes sense to take an antidepressant that boosts norapinephrine.

this all happens in our gut too, which is a whole other area of this illness. so how can they figure all this out with little cameras that go everywhere in our bodies

they can give you brain fog tho.

did you say you had a DBS? i can't recall.

here's my list:

2 25/100 regular generic levodopa carbidopa every two hours - usually between 1400 to 1600 mgs to get thru a night out.

2 amantadine

4 10 mg of pamelor - this is a low dose
2 or 3 xanax for anxiety and sleep -very low dose .05mg
nexium
synthroid - hypothyroid

my question is why do we get end of dose dyskinesia? that kind of ties in with this and makes me wonder if i could have tardive dyskinesia. there's so much to check up on. one of my warning signs for going off is head bobbing. why dyskinesia when off?

i appreciate your input and please let me know what you discover.

so the only dopaminergic drug i take is regular sinemet.

My dyskinesia is dreadful. It is generally much worse when I eat. I flail about and writh until I perspire so much, I have to change my clothes. (Impossible when at a restaurant)
The peculiar point is I only take 150mg of L-dopa (as Stavelo) per day in 3 x 50mg doses. Also, MIrapex 1.4 mg per day, plus Azilect 1mg per day.
A 50mg dose of L_dopa now gives me an "On" of up to 6 hours, but my offs are awful, can't walk. I believe long term use of curcumin has enabled me to reduce my L-dopa from 800 mg per day max, to 150mg.
I was diagnosed 20 years ago, and started dyskinesia about 8 to 9 years ago. Amantadine largly got rid of it, but stops working after 6 months.
As far as I can judge, the research community neither know what causes it, or how to stop it.
Ron

Ron-

Does it begin immediately as you start a meal? As you finish? etc.

How long does it continue past the meal?

Does the nature of what you are eating have any effect? Carbs, protein, fats, etc?

-Rick