As most of you know, I have aggressively treated my Parkinson's - even having experimental brain surgery years ago - where dopamine-producing retinal cells were implanted in my putamine unilaterally (one side of brain).

I was in Phase I, the safety phase, of this trial where 6 volunteers went into the study knowing they were getting the real thing. There were ups and downs, but after 48 months there was nearly a 50% improvement over baseline symptoms for participants.

Phase II (72 participants) received bilateral transplantation and after 12 months, the trial was halted because the Phase II participants did not meet endpoints. That was in July, 2008. It has been nearly 11 years post-op for me, and over the past 6-8 months, I have bad dyskinesia with dystonic-like pain.

But I have discovered something - I can almost say with 90% conviction that the dyskinesia is NOT resulting side effects of the medications I take. Why do I say that? Because after having PD for nearly 18 years, my medication regime is this:
L-dopa: 6 to 7 tablets of 25/100 Sinemet; one every 3-4 hours
Agonist - 4 Requip (2 mg) with the first 4 dosages of Sinemet
COMT inhibitor - Comtan - 1 200 mg tablet taken with first 3 daily dosages of Sinemet/agonist
1 MAO Inhibitor 5 mg Selegeline tablet taken with morning dosage

I take a small amount of dopamine in comparison to Rick, and still have dyskinesia. I get worse dyskinetically about 30 min. after taking meds. and now I am beginning to get more dyskenetic when end of dose is near!

I say all of this to say that in my case, and possibly some of you are doing likewise, with the advancing of the disease itself the cause of dyskinesia, and NOT a side effect of the meds. Remember, I only had the dopamine-producing cells implanted on one side of my brain.

And in response to Atme's reply, YES - I am convinced that this disease has everything to do with an autoimmune disorder! I have had hypoglycemia dx years ago, and had an overactive thyroid removed about 40 years ago. I have also been dx with fibromyalgia and osteoarthritis. My pain may be more age-related than disease-related.

I SAY ALL OF THIS TO ASK THOSE OF YOU EXPERIMENTING WITH MEDS TO HEED THESE POSSIBLE WARNINGS:

1) DYSKINESIA MAY NOT BE A MEASURE OF THE EFFICACY OF YOUR DOPAMINE LEVELS - it could be a symptom of advancing PD
2) YOU MAY HAVE AUTOIMMUNE INVOLVEMENT ALONG WITH PD, SO BE CAREFUL ABOUT CHANGES in DOSAGES AND SCHEDULES
3) YOUR DIET , GENETIC MAKE-UP, MENTAL STATUS AKA MOOD, AND/OR ACTIVITY LEVELS PLAY A HUGE ROLE IN YOUR SYMPTOMS.
4) THERE IS A MINIMUM 2-WEEK WASHOUT TIME FOR SINEMET, AND MORE LIKE A MONTH FOR THE MAO-I. COMTAN SHOULD NOT BE ABRUPTLY HALTED AND CAN DAMAGE YOUR HEART.

BOTTOM LINE - BE CAREFUL WHEN SWITCHING MEDS AND DOSING TIMES AND ADDING SUPPLEMENTS - WE ARE ALL VERY DIFFERENT

Peggy

Hi Peg,
iI do believe dyskinesia is a side effect of taking levodopa, I don't think that the fact that you take a lot less sinemet than Rick means it is not due to levodopa. As far as I know, you only get dyskinesia after taking levodopa. certainly I have never had it unless I have had sinemet. I even take less sinemet than you, after 20 years of PD. I take only 150 to 200mg per day. Today.I was on for 5 hours after a 50mg Stavelo.
I find dyskinesia occurs in the final stages of my levodopa. I take this to mean the DK is probably caused by a toxic by produch of levodopa. The DK peaks at the end of the levodpa because that is when this toxic by product also is at its peak. However, it would be interesting to get an authentic sample of this toxin, and see if it gave you DK. Any white rat volunteers!!!
Ron

If I could be a white rat right now, I most assuredly would! Why am I getting "off" dyskinesia (aka end of dose)? Is the L-dopa toxin building up in my gut or what? You know far more than I do about these issues.

You do know, I am sure, that Stalevo counts as L-dopa because it is a mixture of levodopa and comtan. Are yyou counting that in adding up your L-dopa intake?

Peggy

I am 8 years diagnosed. I presently take 1.5 25/100s every 3-3.5 hours round the clock plus 1 Comtan 200 with each carbi/levo dose. I get really nasty Dks several times a week. I've started trying the Now Quercetin (400) with Bromelain(100) per capsule. It seems to smooth out the offs and extend my ons by perhaps a half an hour. I'm trying just one capsule 2x a day. I will try upping that to 2 capsules 2x a day. What I have noticed is that every time I play the piano (I'm a professional musician) it triggers Dks. I suspect that playing the piano stimulates dopamine production in my brain which along with the carbi/levo medication causes too much dopamine and triggers the dykinesia. I have tried cutting back on the meds when I play the piano but the stiffness in my left hand renders it almost useless. I wonder about the piano... if it is the activity that stimulates dopamine or perhaps the actual sound frequencies produced.

Just to complicate matters, I get far more dyskinetic from Requip than I do from Sinemet. Also, it is often triggered in me by, among other things, eating spicy foods or talking on the phone.

[QUOTE=reverett123;757274]I had intended to wait another month before posting on this one, but the group could use a little positive push right now, so I'm going ahead.

A month ago, I had a problem. I was losing the use of my legs. It was most noticeable at night. If I tried to get out of bed the muscles went into tetany and would not function. I was pretty maxxed out on meds. 24 mg of requip plus about 1500 mg of sinemet total in both forms. As Laura mentioned, I have been dealing with some unusual problems for a year now and it was taking that much medication to make it through. Taking something every two hours. Having to hit the bed by 8:00 PM just to avoid crawling or, worse, a total lockup. /QUOTE]

Today I did pretty well with the following-
8 AM- 1x Sinemet 10/100 plus 1X Sinemet CR 50/200
10 AM- Repeat above
Noon- 1x Sin 10/100 plus 1/2 of a Sinemet CR 50/200 (or 100 net)
2 PM- Forgot to take anything
3 PM Took 1x Sinemet 10/100
4 PM- 1x Sinimet 10/100 plus 1x Sinemet CR 50/200 plus 1x Qu 400 mg
6 PM - Repeat 4 PM dose

That should do me for today. 1200 mg of sinmet. No requip although I will probably take 4 mg before bed to fend off RLS. Bed around 9 or 10.

Also, spent much of the afternoon working in the garden under sun in the 80s.

More intriguing, the last few days I have been feeling better. More hopeful Also, my GI tract is continuing to do better. And yesterday morning, for the first time in ages, I smelled coffee from the opposite side of the house!

Finally, never one to sit still, yesterday I decided to double the saw palmetto and silymarin that I had already been taking. Not good science, I fear, but my prostate is the boss of the former and my liver the boss of the latter. Scullcap is unchanged.

I had constant DK at 500 mg of levo/carb a day. And total brick mode when off.

Hi Peg,
Yes, I know Stavelo contains levodopa. I take 3 to 4 Stavelo 12.5carbidopa/50mg levodopa and 200mg entacapone. So the total levodopa I am taking per day is 150 to 200mg. The toxin has a very long half life, so it will probably build up in your system.

Rick, How do you know Requip gives you more dyskinesia than levodopa? When you are taking 1200mg levodopa per day, you will always have it in your system. You would have to clear your system for a day or 2 then take only Requip to see if it gave you dyskinesia. To complicate matters, as I mentioned, the toxin which I suspect is causing dyskinesia, builds up in your system, and would take some time to clear.
Ron

Peggy, and all,
Is there some confusion about dystonia and dyskinesia? I am asking those who know, as some medical descriptions do not give a clear picture, and in fact when reading them the descriptions sometimes seem interchangeable, and sometimes describe two clearly distinguishable states.

The reason I am asking is that I have successfully avoided, I thought till recently, the much feared dyskinesia, though I have always had dystonia as a feature of my PD. A few months ago I started to have abnormal movements, especially when doing more or out walking. Among these movements were ones I recognised from other people that I know personally. And it made me very fearful that I was entering a new stage. At the same time I was waking feeling significantly worse, and noticed that I was having a lot more problems turning over in bed, getting out of chairs, and with very significant and increasing lower back pain on wearing off.

Very reluctantly I increased my a.m. dose and added a half sinemet onto my night time regime. I was expecting the abnormal movements to increase, and they didn't, instead they disappeared. Leaving me puzzled...... but feeling somewhat better, with the exception of a return of sleep issues.....

So I hear what Ron says about dyskinesia only being caused by meds, but I am also wondering about what Peggy describes and is raising about it being a part of PD.

I've always been on low dose and always on sinemet only. Never taken agonists. And through the great advice on this forum I've always aimed for a slow steady intake of l-dopa. Which means dividing pills and not increasing overall intake unless absolutely neccessary.

The interesting thing for me was that those movements were new, not something I had before, and that a small increase made them go away.......
And I thought I knew what was dystonia is, and that dyskinesia MUST be this new and different stuff....

I thought I understood this thing, but clearly I don't!

So my question is to all of you who are experiencing dyskinesias, is where from the patient perspective is a way of knowing? At the moment I am veering towards dystonia as an end of dose thing, and dyskinesia as a peak dose thing, rather than looking at the actual quality of the movement and discomfort. And I know I may be very very wrong in my thinking. But I WOULD like to understand this thing. And why some of us get such dramatic and negative results from l-dopa and some of us go a long way on a little.....

This probably needs a new thread, but Peggy's comments made me think....
Apologies, Rick, as it is not quercetin related, but I do want to try that soon, and the fermented papaya too, as they both sound as though they have a potential that I have not seen in some of the other supplements.....

Since my DBS, I have cut meds in half and no DK. Still experimenting while fine tuning my stimulator and if I take 1/2 levo/carb more, the DK start. So I really suspect the levo/carb is causing them.

Lindy, have you ever watched M. J. Fox at his worse, when he is having involuntary movement, that's how I was prior to DBS.

The only other PD meds I take is amantadine.