just a variation on a theme...PD and medications. My present state of affairs is: as long as I don't eat anything I'm stable !!!! The cycle goes like this: First I eat, then blood sugars rise, which blocks my meds if taken within two to four hours of eating... that requires me to either wait it out ( the shaking that is...does not look like tremor) and amplitude and frequency increases with how much I've eaten. My system is busy producing glucose for a quick rise and then an equally quick drop. Sort of like those drop rides at the fairgrounds, or a bungee jump. My tempreture rises, sweats set in and I guess the body wants the sinemet for the adenalin to deal with the crisis. Thats where I have to say STOP! More sinemet just fuels the flame and thats how i ended up at the emerg. The wireing is in need of repair, review, renovation....whatever. Anxiety is a big part of it. but I feel it is chemically induced anxiety. Stay tuned.

according to what i have read, ordinary use of levodopa does not constitute addiction.

while there are aspects of its use and its cessation that are akin to aspects of addiction, for example, the need for ever increasing dosages and (usually) the suffering of differing degrees of severe effects when the drug is withdrawn suddenly, i think two crucial aspects of addiction are the compulsion to abuse the drug (i.e., self medicate in excess of the prescribed amount), and to continue to do so even in the face of negative consequences - and while such abuse of ldopa certainly occurs, i would think it is relatively rare.

having said that, i do consider levodopa to be toxic - dyskinesias are clear evidence of that. I have a friend who is a breast cancer researcher, and he said that such a side effect would absolutely be considered evidence of toxicity in the breast cancer world.

Also, consider this - while most PWP do derive effective symptom relief from ldopa, they do so for varying periods of time.

and while there are no doubt a variety of variables that determine how long ldopa remains effective and side effect-free for each person, one's age has been identified as key - the younger you are, the better response you are likely to have from ldopa, and the sooner you can expect to start experiencing the big three downsides: wearing off, on/off fluctuations and dyskinesias.

as a young onset 11 years into symptoms and over 6 years past diagnosis, by all accounts i have read, which are confirmed by my admittedly limited exposure to other young onset folks, if i had started taking ldopa 6 or so years ago, today, at the ripe old age of 42, I would be well on my way to experiencing the worst of it.

and regarding cessation of the drug as an option, there is no reason to think that my experience would be different than anyone else's, i.e., whatever i would experience if i went off the drug would be worse than whatever the drug itself was causing - and so i would be stuck - if not now, surely within the next few years.

and i would never have known that had i NOT taken levodopa and had taken a dopamine agonist instead, i would have been -relatively speaking - fine.

i am extremely fortunate that my constellation of symptoms has allowed me to forego levodopa, and the near certainty that i would be in far worse shape now if i had had to take it, or, worse, hadn't really needed it but been given it nonetheless, is clear evidence to me that levodopa is a double edged sword, and a decidedly short-term solution that, unfortunately for all of us, has somehow come to be regarded as adequate in the long-term.

the newer dopamine agonists are a huge step in the right direction, but even those are only sold to us as monotherapy for a few years - after which time they become, like all other pd drugs and even dbs, levodopa adjuncts.

in my opinion, while pursuing neuroprotective and neurorestorative therapies is all well and good, i would much prefer to have a drug i could count on to alleviate my burden, not to add to it, while i wait for the those therapies to be discovered and brought to market.

well, i dunno if it would be considered addictive in my case. I have been on the stuff for 22 years now, but thats because without it i cant move. not because im addiccted to it.. because i have had pd for 22 years. what is strange to me is that i have had dyskenesias from the very first pill i took. i virtually hated the stuff, but preferred being mobile to being stiff. i dont think this is concidered "addiction".

when the med does begin to work, and my mind and body get that "rush", it is a rush of relief. the tenseness is disappearring, my thoughts are returning, I am relaxing. pd is a disease that robs us of dopamine. without dopamine... we dont function well, and as it progresses, we dont function at all.

I have been recently told by my neuro that while Im "on".. meaning that my meds are working.. Im at about a stage 3. ithe disease itself has entered stage 5. I think that at this point I would rather feel the stage 3 then the reality of stage 5. If this means im addicted to the stuff, so be it.

Dear Steffi,

I was up to 1800 milligrams and also taking comtan, mirapex, zooloft, saroquel and I hope that was all, when I went into the hospital. The director of the Mayo movement disorder clinic assured the doctors no harm could come from Sinemet and I was sent to hear him because I kept my dose too low according to my neurologist. I know it is toxic, I don't know if it is addictve. Had DBS and am back doen to 600 mg and 1 mirapex tab, 1 seraqual and 1 zooloft.

I am suspecting there is a problem with the placement of the DBS battery on my left side, as I have excruciating pain when I move the left arm.

Vicky

Hello, new comer here.

I am writing this on behalf of my father-in-law as he doesn't speak English.

He has been diagnosed with PD for 5 years. Until late last year, he took med only when needed (e.g. when we go out to the zoo). So most of the time in a day, he was at his "OFF" state. But back then (Sept. 07), he was able to walk around, albeit somewhat dragging his left foot. We saw a doctor in U. of Michigan hospital who advised him to take the sinemet regularly.

After that, he could regularly get more "ON" time, but what happened is that his condition of "OFF" state becomes significantly worse. Now at "OFF" state, he could barely walk at all. So we are very much concerned that the increased intake of sinemet actually suppressed internal production of dopamine.

Have any of you had similar experience, that is the higher the dosage of med, the worse the "OFF" state?

Also, he has very strong muscle pain/cramp, so bad that now he can manage only a couple of hours of sleep every night. He describes as "as if having his left extremities and body tightly wrapped with bandage". He gets instant relief from the pain/cramp at "ON" stage which is preceded of course, by the med. I asked the doctor for muscle relaxant, didn't work.

We'd really appreciate any comment on sharing the management of muscle pain/cramping too.

We are glad to find this group for the support.

The muscle cramping is (I think) is dystonia which usually happens with an off.
It can be excruciatingly painful.
I don't think your fathers offs are worse when the Sinemet wears off but rather that his parkinsons has progressed over the period of time he's been taking it which by the way it would have whether he took Sinemet or not.
I'm guessing here by assuming he's elderly so perhaps upping his dose or giving even half a Sinemet at regular intervals before an off starts may help lessen the occurrances of the offs which subsequently would help the dystonia.
He's at an increased risk of falls too when he's off and sounds to me like he's under medicated for Parkinsons.
Hope this helps.
Boann, You often come across as promoting agonists and giving Sinemet the thumbs down.
Agonists have caused problems for me. Plus they did bugger all to help my symptoms. Sinemet helps those of us with akinesia and bradykinesia to do things like move.

It would appear that his Parkinson has indeed progressed like you said, made it up. However, we are just surprised that the progression is so big over such as short period of time. I mean, people say that Parkinson's progression is calculated in years, not months. He shows a world of difference just between now and last October. He thinks if things progress at this rate, he will be completely lose his mobility without meds within 6 months. So we keep think (or should I say hoping), that it wasn't the progression of the disease but something external.

More about himself, yes, he is elderly, 66 this year. For almost 5 years, he has taken Madopar (Levodopa+Benserazide by Roche, available mostly outside of US) and about 3 months ago, switched to Sinemet at the advice of our doctor. His daily Levodopa intake is about 1100 mg. No dyskinesia so far.

The progression of his PD was relatively slow up until last Oct. He would take half a tablet of Madopar (100 mg Levodopa) before he had to go to a meeting or a formal dinner. He said that the med usually kick in and set him to "ON" state within 30 minutes and last 2 to 3 hours. Since about the time when he started to take the meds regularly the wait time between med intake and "ON" state has become longer, and the length of the ON time has become somewhat unpredictable. And if he were to cut the med, the muscle's "numb and bloated" (his words) sensation becomes intolerable.

That's why the title of this thread immediately caught my attention.

Oh, he hasn't tried any agonist.

Thank you again!

Has your father in law began any other medications within this time period of rapid progression of symptoms--not just for PD, but for any other condition?

I think the meds can work in different ways for different people and there are many factors that go into the balance. I am one of those who completely disagree that the worsening off-time is entirely due to the worsening effects of the disease. I have been on various Parkinson's meds for at least i think 14 years now. They only started to get really problematic when I started Mirapex about nine years ago, and have gotten somewhat less problematic since I decreased and now have (at least for the moment!) entirely stopped mirapex. The thing is that during my good on times that I still have some of the time, even my doctor says he wouldn't know I had PD. I don't think ths would be achievable if the off times were really representative of my actual idiopathic disease state. I think there is definitely an under-acknowledged secondary (if you want to call it that) disease process that is created by the medication.

In my experience, the painful dystonia described above is totally caused by the drop of medication in the body, and only appeased by its replacement, although some things like Benadryl and Klonopin or even Atavan can help relax the muscles, as can working with breathing techniques, and having someone help move the affected person's or limbs around (very sensitively) to help relieve the cramping. I would do all that I could to avoid the dystonias because I think they are very shocking to the body.

So I think the l-dopa definitely decreases your body to do its own work properly, that ultimately for me the agonists have been a quick fix that cause even more serious problems, and one should not make sudden changes in any of these...making the recent recomendation by the Neupro patch people to make the required titration off in three days bordering on the criminally negligent in terms of how it endangered people.

And no, I was not warned about any of this before embarking on taking them. I feel increasingly angry that the side effects and dangers of these meds are not taken that seriously by many doctors, and that they don't even take the time to educate themselves about them.

Olsen, he is also taking some kind of blood pressure control medication. I don't remember the exact name (I can find out), but it's something pretty common, nothing exotic. He has been on BP med for nearly 20 years.

Other than that, we cannot recall that he has taken anything out of the ordinary.