What's this about Sinemet being addictive? - Cure Parkinson's

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What's this about Sinemet being addictive?

kaypeeoh profile image
22 Replies

I'm up to Sinemet 25--100 1.5 tabs three times a day. During the exam last month the neuro saw signs of PD but mild enough I never noticed them. So if I'm improving I can't tell. Every day I spend 2-3 hours on the treadmill walking at various inclines. Because of a weak back I've been using a Slendertone abdominal toner but haven't yet felt any improvement. I go back for a recheck next week. My list of questions keeps getting longer.

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kaypeeoh
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22 Replies
beehive23 profile image
beehive23

levodopa in most forms is addictive to the human body as water...food....amino acids etc. its kind of like saying my car is addicted to oil..........i hope that helps........cheers.

kaypeeoh profile image
kaypeeoh in reply tobeehive23

Thanks for the note, I've been addicted to caffeine since I was 10.

beehive23 profile image
beehive23

first they have to admit it kills you..........evertime a celebrity comes out in thier pd honeymoon phase talking about how its improved thier outlook or how strong they atre the people who make fun of it keep right on going......cheers.

park_bear profile image
park_bear

Levodopa addiction is rare and usually involves high dosages.

kaypeeoh profile image
kaypeeoh in reply topark_bear

Thanks, I worry because of a lot of addictions in the family; My sister is on meth, a cousin died of alcohol, my brother is in prison for a drug-related murder.

bcowart profile image
bcowart in reply topark_bear

Interesting, PB. What constitutes a high dose? Where did you read about that?

park_bear profile image
park_bear in reply tobcowart

Dopamine dysregulation syndrome in Parkinson’s disease: a systematic review of published cases

jnnp.bmj.com/content/88/12/...

" Dopamine dysregulation syndrome (DDS) is an uncommon complication of the treatment of Parkinson’s disease, characterised by addictive behaviour and excessive use of dopaminergic medication."

From behind the pay wall:

" table 1 Data from cases of dopamine dysregulation syndrome

LEDD (mg) [levodopa equivalent daily dosage] 2148.2 "

rideabike profile image
rideabike

Recent neurologist wrote in his summary that I "use L-dopa for cognitive reasons" (he forgot the other reasons like subdued the head tremor). I had said it seemed to relax my facial muscles enough to smile and make eye contact easier??

Lack of dopamine inhibits serotonin and other feel good neurotransmitters so I didn't get the point he was making.....almost like saying she's addicted to a feel good drug.....and yes beehive23 .... it's much like water, food and amino acids. Great analogy!

PalmSprings profile image
PalmSprings

I am not sure of the addictive properties of Sinemet but I don’t move or feel very well without it. I guess I am addicted. I was addicted after the second week after I titrated up to 1.5 tablets 3 times a day and I finally felt better. I hadn’t felt very well for over 10 years. It felt like an “Awakening”. I am now on 2 x 4 tabs a day and I feel like it allows me to feel normalish. I dumped the Azilect (the expensive designer drug). And I felt a huge cloud lift? This is such an individual journey and each of us have almost to find our own path. Good luck in your journey!

Cagey84 profile image
Cagey84

Our addiction to levodopa is like a diabetic's addiction to insulin (although less serious if not taken). We take it for genuine therapeutic reasons. It's nothing like a true addiction such as to e.g. opioids which are taken to prevent symptoms of withdrawal, long after the initial health problem has gone .

in reply toCagey84

It's a bit like being addicted to air or water really.

park_bear profile image
park_bear

Regarding preceding comments. The concept of addiction is commonly misused. Per Wikipedia, the definition:

" Addiction is a brain disorder characterized by compulsive engagement in rewarding stimuli despite adverse consequences."

I have seen the idea of addiction misapplied to the need for asthma medications in order to breathe. Likewise Parkinson's meds as people here describe. The key to the correct usage of the term addiction is the dependence upon some substance for pleasure and in spite of adverse consequences. The need to use a substance in order to engage in the ordinary activities of daily living does not qualify as addiction.

MarionP profile image
MarionP in reply topark_bear

No, addiction is a natural mechanism that pervades the whole of neurology construction and functioning, it is only when the associated mechanism in specific applications get out of control and adaptation exceeds normal bounds into destructive outcomes that it attracts much general attention and concerns. This is what makes the word so confusing when professional and common parlance using the same exact words collide. Long established that "addiction" supports survival and underlies, just for one example, nearly all of what we call "non-associative learning." That includes feel good mechanisms driven by what we used to call alkaloids, opiates, and internally-grown opiods such as "endorphins".

Others in recent decades have come along to give the basic transactions sexy new names like "addiction pathway," "reward pathway" and the like, and the new common wonder words "dopamine" but that is just new marketing and more specific description, as science has moved ahead to be able to describe and track phenomena more and more closely and specifically.

Less upsetting, histrionic reactions occur when people understand that the older terms "negative feedback loop," "up-and-down-receptor regulation" and other terms fit better because they are less vulnerable to fears and "ain't it awful" marketing and exaggerations for the benefit of feeding anxieties. Ever hear of the phrase "positive addictions?" No, because, even though the fitness advocate who coined it made some marketing headway, it wasn't sexy enough because of the horrible associations the general public had to the specific word "addiction," so it really never caught on. But the same process drives success, running habits taking on their own internal reward feelings that sustain the habit as "feeling good" such as running and exercise, biking, whatever physical activity sustains you as "feeling great after doing it."

And the exact same mechanism underlies satiety in general, i.e., eating, which for the exact same reason and comprising the exact same mechanisms keeps you from dying. Sex too, keeps the species from dying. It's only when it gets out of control and causes harm or the excess does, like drugs, alcohol, smoking, caffeine, chocolate, just plain old fat, drinking, whatever horrible outcomes it gets tied to, that we start to connote it as the negative "addiction." Individuals vary in how quickly they respond to the individual mechanisms and move them along without good moderation in their own neurobiology, which is why these things as severe excesses sometimes seem to be worse in certain families, and definitely that is real. Yes, food is exactly truly "addictive" in the same exact mechanism.

Like I said, given the exceeding doses you mentioned from that paper, there is nothing to see here. If she ate a favorite comfort food or something else, it's the same mechanism as all the others, just tiny.

Isthistheone profile image
Isthistheone in reply topark_bear

Park Bear you could have been an MD, at least a great bartender! Great answer! I might be addicted to your replies.

MarionP profile image
MarionP

This question is one you can put to bed. There is no material concern here at all. Even if your neurology is highly sensitive responsive and adaptive, in this case there is nothing to see here. Really.

No, addiction is a natural mechanism that pervades the whole of neurology construction and functioning, it is only when the associated mechanism in specific applications get out of control and adaptation exceeds normal bounds into destructive outcomes that it attracts much general attention and concerns. Long established that "addiction" supports survival and underlies, just for one example, nearly all of what we call "non-associative learning." That includes feel good mechanisms driven by what we used to call alkaloids, opiates, and internally-grown opioids such as "endorphins".

Others in recent decades have come along to give the basic transactions sexy new names like "addiction pathway," "reward pathway" and the like, and the new common wonder words "dopamine" but that is just new marketing and more specific description, as science has moved ahead to be able to describe and track phenomena more and more closely and specifically.

Less upsetting, histrionic reactions occur when people understand that the older terms "negative feedback loop," "up-and-down-receptor regulation" and other terms fit better because they are less vulnerable to fears and "ain't it awful" marketing and exaggerations for the benefit of feeding anxieties. Ever hear of the phrase "positive addictions?" No, because, even though the fitness advocate who coined it made some marketing headway, it wasn't sexy enough because of the horrible associations the general public had to the specific word "addiction," so it really never caught on. But the same process drives success, running habits taking on their own internal reward feelings that sustain the habit as "feeling good" such as running and exercise, biking, whatever physical activity sustains you as "feeling great after doing it." And the exact same mechanism underlies satiety in general, i.e., eating, which for the exact same reason and comprising the exact same mechanisms keeps you from dying. Sex too, keeps the species from dying. It's only when it gets out of control and causes harm or the excess does, like drugs, alcohol, smoking, caffeine, chocolate, gambling, just plain old fat, drinking, whatever horrible outcomes it gets tied to, that we start to connote it as the negative "addiction." Individuals vary in how quickly they respond to the individual mechanisms and move them along without good moderation in their own neurobiology, which is why these things as severe excesses sometimes seem to be worse in certain families, and definitely that is real. Yes, food is exactly truly "addictive" in the same exact mechanism.

Like I said, given the exceeding doses parkbear mentioned from that paper, there is nothing to see here. It's not like you are on smack (except if you go off of it, you had better do so very gradually). If you ate a favorite comfort food or something else, sugar, whatever, it's the same mechanism as all the others, just tiny.

kaypeeoh profile image
kaypeeoh

So I don't get any sort of 'high' from taking sinemet. And if I forget a dose I don't get a withdrawal reaction. That was my main fear, that it was addicting like narcotics can be. I realized that today when I spent 4 hours on the treadmill, alternating a brisk walking pace with short sprints at 10% grade.

An hour later I am still feeling the well-known 'runner's high'. I don't get that from sinemet. For me the closest thing to it was when a horse kicked me in the face shattering my jaw into a dozen pieces. Post-op I was prescribed demerol, a potent narcotic.

My jaw was wired shut for 10 weeks. I lost 40# and took up distance running to keep from regaining the lost weight.

kpo

in reply tokaypeeoh

There's a shitload of misinformation on this forum and sadly some of it lately has been about how CL is 'addictive' (pushed almost exclusively by one particular poster). It's no more addictive than food or water.

Somic67 profile image
Somic67

pls read this on addiction of L/C for PwP.

healthunlocked.com/parkinso...

(BTW, i'm the bad poster supporting the addiction theory.

DO NOT DO BY YOURSELF OR AT YOUR HOME - A way to know if s.one is addicted is to suspend l/c as long as possible and see what happens - if Neuroleptic Sindrome arises (with acute, frightening and incontrollable motor and non motor symptoms, similar to those of cocaine withdrawal) then addiction is probable.

This sindrome may be very acute and also dangerous (malignant).

So, DO NOT DO BY YOURSELF OR AT YOUR HOME

Rgrs,

Somic67

in reply toSomic67

No kidding PWP going without CL will feel like crap. That's literally the point of taking it.

Going without food or water will make us feel pretty shit too. I guess we are "addicted" to water.

Somic67 profile image
Somic67 in reply to

i agree with you.

no kidding with drugs' withdrawal. I've modified my comment accordingly

Somic67 profile image
Somic67 in reply to

have you ever tried a L/C withdrawal sindrome?

is has nothing to do with fasting or not drinking, really nothing.

park_bear profile image
park_bear in reply toSomic67

NO! Do not ever abruptly cease taking large doses of levodopa, under any circumstances. The point of the references that you linked to is if a person is taking a large amount of levodopa (900 mg was the average), and completely quits cold turkey, the results could be life-threatening. The patients who as a result suffered neuroleptic malignant syndrome were all hospitalized for over a week. This has nothing whatsoever to do with whether or not they were addicted, according to the correct definition of the word addicted. This has to do with the body being unable to accommodate sudden cessation of a large amount of levodopa. The moral of the story is to make gradual adjustments.

Extract from one of the references:

"These patients were on an average dose of L-dopa 906.81 mg daily... The patients stopped all their antiparkinson treatment. After the sudden withdrawal of L-dopa they had an average latency period of 92.72 h before developing NM-LS."

The way to know if a person is addicted to levodopa is different. Addiction is taking more levodopa than is needed to suppress symptoms in order to experience a dopamine high. Dopamine addicts will persist in overdosage in spite of adverse effects such as dyskinesia:

jnnp.bmj.com/content/75/9/1365

" L-dopa dependence results in paranoia, hypomania, hypersexuality, and euphoria associated with weight loss and severe dyskinesias. Many of the behavioural changes are similar to those seen in amphetamine or cocaine abusers and have been termed 'hedonistic homeostatic dysregulation'." [Emphasis added]

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