A friend shared this article and I wonder if some of us who escalated to needing high doses of levodopa early on are not at some level experiencing something like this? In other words our physiological need triggers an addiction response to levodopa. If we take into consideration that our brain's reward center has most of its dopa intact, so when we take ldopa we have just enough to keep us moving in the substantia nigra, but the other midbrain area gets flooded with too much dopa and D2 receptors possibly too stimulated...could this be what happens with levodopa? See the two articles both on junk food addiction but you can easily replace that with heroine, cocaine, or I am wondering...levodopa?!? Seems to make sense to me. Notice how in article they use "crash" to describe not having the drug? This is exactly how Paula described going "off". I would agree and if we consider that it may addictive our harsh "offs" are actually more withdrawal and less to do with disease progression like we are told?

from M. Bittman:

A 2009 study by the Scripps Research Institute indicates that overconsumption of fast food “triggers addiction-like neuroaddictive responses” in the brain, making it harder to trigger the release of dopamine. In other words the more fast food we eat, the more we need to give us pleasure; thus the report suggests that the same mechanisms underlie drug addiction and obesity.


http://www.scripps.edu/news/press/20100329.html

http://www.nytimes.com/2011/09/25/op...l?pagewanted=2

Quote: Notice how in article they use "crash" to describe not having the drug? This is exactly how Paula described going "off". Quote.

What thread with Paula? Any others can describe going off, crashing, to me? I have these major crashes more than once a day, since about 4 or 6 months. Or three months; maybe two – no sense of time. Going Off in crash mode feels like an overdose followed by a crash. (Not that I would have experience of that personally, of course. I think I read about it somewhere, maybe Irresponsible Parents Magazine)

Quote: ..our harsh "offs" are actually more withdrawal and less to do with disease progression like we are told?.. Quote

I would LOVE that to be true, because so far I have been telling myself that it is the disease progressing; some months it’s like freefall and if they have invented parachutes already, nobody told me. I would LOVE to find out that the disease is moving at “normal” speed, even though we don’t know what “normal” is with PD (whereas most people in society seem to know EXACTLY what is normal): a drug addiction with peaks and crashes is just my cup of tea, as they might say at Sun TV
I can learn to deal with that; whereas if it is entirely the disease progressing faster, we are back in blind territory.
It would be great to discover that my very worst times are just a withdrawal from an addictive drug – piece of cake to roll that back. Comparatively speaking.

I don't think there is any doubt that we quickly become an addict. Heck, go over to PLM and eavesdrop on the conversations (MY meds. MY sinemet. It sounds like a line of kids waiting for tickets at a rock concert.) And there is the requip effect. Sounds like a junkie to me. And how often do you leave the house without your stash?

BINGO! Rick's street smarts once again cut straight to the evidence.

I'm an admitted addict of those yellow, pink, and blue levodopa tabs. It will be a shame when they don't work anymore.

HG

[QUOTE=Happyguy;810224]I'm an admitted addict of those yellow, pink, and blue levodopa tabs. It will be a shame when they don't work anymore.
HG[/QUOTE

I agree entirely. They say don't follow your addictions; well show me somebody who knows how to live it.

Dopamine junkies:
Ask not what pharma can do for Parkinson’s.
Ask what Parkinson’s can do for pharma

So how do junkies handle this? Several addictive drugs; addictive personality, disease that mimics addition. Don’t leave home without them. I guess I just keep increasing the dosage until smoke comes out of your ears.

Sweet Sister Seligelene, put your cool, cool hand on my head
Miraculous Mirapex, take me gambling instead
loving levodopa, replace the dope mine in my head

Feel bad, can’t control, pop the pills; much worse after taking the pills; very painful for 30 – 45 minutes; completely or almost completely unable to function; unable to roll over or cover myself with a blanket; cannot walk except drag feet, and even that is just for a few hundred feet; better on all fours, climb stairs like a cat is easy and safe but freaks out the Normals; cannot tear a single sheet of writing paper with two hands; dark waves of black thoughts; not sure whether to take more drugs but scared not to take them; not sure if, right then and there, I have too many drugs in my system, or not enough.

After some minutes or hours, it’s like the tide ebbing, and if I can go with it, trying to be catatonic, sounding, breathing, trying to sink into another part of my brain; trying to attach my brain to a song or a painting or a movement of the body or something funny or beautiful or strong or angry or loving or reciting parts of a play in different characters… try everything and anything that resonates and gives me back some control… and if all is right with the universe, the drugs kick in as advertised; the pain goes, and sometimes I can crank it up to an actual state of euphoria.

Far out, man. But these are not recreational drugs.

They spend a fortune trying to keep people off illegal stoner drugs - there are rehab joints; they make anti-drug presentations in the schools; they promise Ten Easy Steps to get off drugs.., they try to get the junkies to go straight. But has there been any research about how to best live as an addict, if stopping the drugs will kill you?

I have heard all the experts finding ways to fight addiction; is anybody working on the best ways to continue to be an addict for the rest of your life? Is there any good way to be a junkie?

As long as you move forward knowing that pills are your friends...things will be happy. We need pills to move, to not to move, to sleep, to screw, to poop, live the addiction !

HG


[QUOTE=Bob Dawson;810323]

I know we are addicted and when i started waking up twisting with dystonia, i felt like this could be drug addiction withdrawal. My end of dose and 'off' dyskinesia are completely different.

LAURA oops didn't mean to shout, i think it's stronger than fast food addiction - i think its more like heroin or oxycontin. Our movement and likely our breathing and swallowing depend on it. we could die going off cold turkey, but you know this. What would cause our death? Withdrawal? or PD progression?

PD makes it difficult to compare to other addictions because we have no choice but to replace l-dopa somehow. Even if it's neuropsychiatric illness we have to take it .

What happens if you dont take the pills? Worse than if you do?

um, not sure. it slowly gets worse until i chicken out and take the pills; but when i take them it gets much worse suddenly, before it gets better.
or if i take them on a schedule, feeling fine, then bad reaction to pills then feel better. will try not taking for a longer time
but seems not takng is slow poison, ,taking is fast poison then relief.
also full body tremors wake me up at night, never did before
seems my body is resisting the drugs and i am toast