Reducing dosage of Parkinson's drugs can cause symptoms similar to those of cocaine w

egghead5 · 11-09-2012, 09:15 AM

Carey/Indigogo,

What is the latest here? I know this thread is some years old but you said you asked Robin "what's next". What did he say?

Just so I understand this study (from 2010), it says yes some of the patients exhibited compulsive disorders, but also some had "anxiety, panic attacks, depression, sweating, nausea, generalized pain, fatigue, dizziness and drug cravings. These symptoms can be severe, and are not alleviated by other Parkinson medications."

And yes Sinemet can be beneficial. But what if there are other treatments that are beneficial, sans dangers of withdrawal and hence addiction?

I'm sure you folks saw the non-peer reviewed, anecdotal, Once Upon a Pill ebook by Janice Walton Hadlock. I think it described Sinemet withdrawal quite well (though I'm skeptical of some of the outlined treatments).

Quote:

Originally Posted by indigogo

Paula - I understand your reluctance to accept anything as new, especially when it confirms behavior we already recognize. The cool, and original, aspects of this research is that it was done by a doctor in clinical practice who noticed what was happening to her patients when an agonist was decreased or stopped - and then did something about it.

I wrote to Robin Elliott at PDF about it. He says that Dr. Nirenberg's research is genuinely original, and "I have talked to her at length about her work. It was she – alone – who saw these patterns of response to agonist withdrawal, in her own practice. She put two and two together, shared her tentative hypothesis with colleagues at a Cornell Grand Rounds last Fall (I was present), and then submitted her article to peer review. Now it has become a contribution to the science, and part of the lingua franca of discussions about agonists."

This is a doctor who was paying attention to her patients. Robin sent my email to her and she promptly replied, saying "One of the things that I discussed with Robin (while I was waiting for the paper to be published) was my frustration with the slow pace of the peer review process. But unfortunately, in academia, nothing is true until it is published in a peer reviewed journal. So although I presented the data at grand rounds and discussed it extensively with all of my patients who were taking (or contemplating taking) an agonist, it was not until now that the findings could be widely publicized. I am relieved that this time has finally arrived."

This project was retrospective - it used data already collected on patients. Seems to me we could benefit from more of this kind of research.

I_Got_it_2 · 06-10-2013, 04:52 PM

Quote:

Originally Posted by pegleg

I have always contended that these /compulsive/impulsive behaviors are a part of the advancing disease, but CAN be fueled by some agonists. Nothing has been proven on their association. I was in a 7-day study at NIH on this very thing and the report said the control group was no different.

you can literally die from abruptly stopping of PD meds:
(quoting from the link above)
If this syndrome occurs in the setting of Parkinson's disease the treatment is basically the same except the parkinsonian medication should be re-instituted as quickly as possible. Because of the risk of this syndrome drug holidays are no longer routinely recommended for Parkinson's disease.

I say take your meds until they prove it's hurting you!
Peg

Hi Peg,

I just wanted to weigh in with a recent experience. In fact, it is happening as I type this. I recently had a back problem which required me to take Flexeril and Ibuprofen. I was taking Prozac, Cogentin and Sinemet already when I noticed a change.

On the 3rd of this month, June, as I was taking the above meds--to shorten the story I will jump to the end. For almost a week now I have had an immediate positive reaction since I discontinued the Sinemet, cold turkey, 100%. I continued with the other meds and am tapering off the Flexeril and Ibuprofen.

So, for these last six days I have had little Parkinson symptoms and I feel great! I have went from 50% normal to over 90% normal. No more do I need to rush to shave because I'm "on". No more 45 minute showers because I can't move fast enough to cover all the bases. I can pull my pants up, shave, walk, talk, tap my foot to the beat of the music, button my shirt, turn over in bed...you get the picture. A week ago I went from "on" time and "off" time while Parkinsons dictated to me my schedule. And if I ate a meal, all bets were off as I unpredictably crashed. Today, for the last six days I eat when I want, bathe when I want, etc.

Just a short lived experience which has been a tremendous give to me from God. And if I change back tomorrow and once again answer to the Parkinsons, so be it! The last week has been so liberating I can hardly believe it.

Anyway that's my 2 cents worth.

Jim

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