Cole keep a detailed log book with meds timing on time off time food exercise and anything else that relates to your PD symptoms. This tool will give your neurodoc more insight.

jpbd......those lsd "highs" you describe from sinemet sound an awful lot like dopaminergic kindling.....or essentially l-dopa induced psychosis.....im all for PD Alchemy but if your kindling you might want to check out what that might mean for you.....be safe.........

peace


Brer T

BrerT - I am concerned. Definitely different than depression I had when on dopamine agonists or deep depression I had when I got off Mirapex. No hallucinations or such. Just heightened recall and accelerated thinking which leads to jumpy, intense conversations. Still scares me except for the fact that when at the right level, all of symptons go away, I sleep better (5-6hrs straight), and most importantly I like people again.

When I asked my neuro about it he said that if I wasn't having hallucinations, it wasn't a problem.

Of course, he then went back to his standard recommendation - go get DBS. Since I've started seeing him 2 years ago that has been his pitch. He has never actually seen me "off" or any of my symptons. He is suppose to be the best in the area with "early onset" PD but I get the feeling that he thinks I am wasting his time, that he has patients that have "real problems".

Cole - just remember to take it slow and steady. I think that you have noticed by now that we are in whole new world. If I read Ahlskog's book (The PD Disease Treatment Book) correctly, Early Onset PD accelerates much more rapidly than "normal" PD , hence many doctors are not use to progression and need for every more agressive therapies. On the flip side, Early Onsetters tend to respond much better to Sinemet and have far less problems with depression and hallucinations. I had about 4 months where I was able get the dosing just right - no dystonia, no dyskinesia, no side effects and NO PD SYMPTONS. Unfortunately, I seem to have now hit a point where any little protein "upset" on timing or amount knocks me right off requiring a "overdose" response to get out of the crippling cramps on my "non-PD" side. Hope you have better luck.

That sounds manic-like.......i would suggest you just remember to take charge of your condition both physically and mentally, sounds like you have a standard response from your doc....he/she are just looking at their PD flow chart with the boxes and arrows...there's only 3 choices they ultimately have.....1.ignore/dismiss patient 2. give more pills 3. recommend expensive surgery. you could get a psychiatrist involved to help instigate a more proactive response from your doc. frankly if my doc tells me im not having a problem when im telling him i am.....ill file for negligence with his hierarchy for starters......sounds like your neuro is as awesomely clueless as the rest......

hang tough!

Brer T

Helps to cut down and change the time you take it. Lots of exercises and working with the tiredness cycle, meaning, don't fight it, take the rest when your body needs it but force yourself to exercise after rest, it's hard to start but gets better when you doing it.
Happy thoughts, jokes, stress free environment helps also.

Nothing much to add.

Just a post-script to early replies on this chain.

On Nov 10, I got a 2nd opinion from a different neuro, and the "manic" episodes are in fact from overdoses of carpadopa / levadopa. His advice :DBS.

As it turns out, I can slow titrate down on the meds since I was (un)fortunately put on "medical leave" from work .

I'll be keeping in touch along other discussions. My apologies in advance, if I happen to rant a little too much; this sudden shift of gears, though necessary, has shaken me up.

DBS I need that like I need a hole in the head !

lol, jbpd,

Sometimes a little humor is all we have left dealing with this. I feel the same way about DBS. It may be necessary at some point, but I'm hoping by the time that is my only option, they will have developed the spinal chord version of that procedure. Sounds safer.

One interesting note on symptoms. When I went on the double dose of Sinemet in September, several dyskenisa symptoms developed as I've detailed on another thread. One of those that I wasn't sure was the same was I developed in my right hand (I'm right handed) a tendency to multi-click on things with one press of the mouse. More than once, for instance, I clicked on the icon to open up the calculator, and with one click I opened up 5 calculators.

It was particularly annoying in reading emails and clicking on pop-up links because I'd tend to also click on any links behind the pop up. When I closed a window on Firefox, I would end up opening a new tab at the same time I closed the old one. Sometimes it would take several tries to get it to close. Dragging was a particular problem because it was hard to finish a drag action before it ended up stopping the drag and doing clicks on it. Resizing program windows was an exercise in patience.

It got around a lot of that by learning key short cuts for many activities, and setting key short cuts to open programs I use frequently. Like in many programs, Ctrl-W will close a tab window.

Well, when I went back to one pill a dose for October at the doctor's suggestion after I related to her my symptoms, within a week most of my dyskinesia symptoms either went away or were barely noticeable. Except for this multi-clicking of the mouse with my right hand. I figured it wasn't then related to the Sinemet dose, was progression of the disease, and it was pure coincidence that it happened around the same time I doubled the dose. After all, in the last few months, my right hand has developed minor tremors. Since I'm right handed, my left hand never did any mouse clicking, so I would have no indication on that symptom to link with progression.

But interestingly enough, this week as I've gotten back on Sinemet, just int the last 3 days, I've noticed I'm not multi-clicking with the mouse anymore. How long that will last is unknown, but now it puts the symptom back into a Sinemet side effect instead of progression. Otherwise, it wouldn't have suddenly got better when it grew worse on double the dose.

My theory? The double-dose after affects upon stopping didn't totally get cleared out in the first week of returning to a single dose. Or even subsequent weeks. Doing the no-meds for a week flushed it all out, however. Pressed the rest button. Now going back on, my body is at the level it was before I started the double dose.

Either that, or it was just taking a lot longer for that symptom to die off, and last week helped it along much quicker.

Interesting stuff. I was expecting this multi-click tendency would be something I'd have to deal with the rest of my life. Maybe I will at some point, but at least for now, it has stopped.

By way of note, having now been a full week back on Sinemet, I'm finally able to type at the level I was before. Which is not speedy, but much more so compared to where I was at this time last week. I had to go to the two-fingered approach to get any typing done. So I'm now back to my previous normal.