Dopamine Agonist addiction??: I was... - Cure Parkinson's

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Dopamine Agonist addiction??

esorhanna profile image
12 Replies

I was prescribed rotigotine (patch) 4mg/24hr, 4.5 months ago. I am starting to feel a little too amped up from it, including episodes of insomnia. Last week I tried to reduce it by trimming about 25% off one side. Two hours later I began to feel extremely anxious, panicked and put the trimmed off part back on, and haven't tried anything like that since. Am I just being a coward? I disscussed wanting to get off this drug this with my doctor first who actually suggested I try reducing by dose down to only 2mg. I haven't told my doctor about my little experiment yet. I've heard of people who are so addicted to dopamine agonists they had to continue using the rest of their life, and treat any side effects separately,

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esorhanna
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MarionP profile image
MarionP

Addiction is possible. But that word is sometimes a troublesome one, and maybe this is all not for you because you didn't say you were panicking, maybe you were asking about the finer point of titration and adjustment so as to turn down the amp excess as you were kind of saying. We can't assume too much and so we shouldn't assume that you were freaking out, just that you were asking, perhaps casually, oh while I'm adjusting my meds, I learned this from the experience and I had a question kind of kind of academic is this stuff potentially addictive?

But there are others reading this so maybe it is for them, it is an extremely loaded word so there are some who are going to find the word frightening and changing, so I think what I have to say needs to be said for some people out there, just in case.

Perhaps since it is psychoactive neurotransmitter, perhaps addiction is in fact likely. But you are just looking for adjustment and it is less productive to worry about addiction... For instance, psychiatrists often tell people with severe depression that they're need for antidepressant treatment is going to be lifelong. I have been told that about my heart medications. That's been 10 years and the thought is not bothersome now. Also, addiction is a qualitative and relative term in some respect and the way that us lay people sometimes use the concept... after all, we are all addicted to water, we are all addicted to food. And most of our essential nutrients come to that, many of which are on the outside of a bottle of multivitamins... And then there's sodium, got to have that too. And others. For each of these, without a steady appropriate supply, the eventual, sooner or later endpoint or end stage as you would have it, is death. That doesn't even happen with opiates, lack of opiates once you've been addicted still will not actually kill you. Quite truly and literally in every sense of the word, including if we were to treat the addiction to food and water as a medical concept. Throw in air for good measure, we're all addicted to that.

.

The truth is, addiction is actually normal in a large part of our lives and provides for our actual survival, and comfortable survival at that, and it's only a problem when it screws up your life and sometimes only to that extent. I'm not being flip, it was my profession for a bunch of years.. at the functional experience level we talk about, you and i, really often a muddy line between addiction and dependency. Let's exclude junkies because those people are suffering so horribly but the underlying chemistry and processes is often much the same, it's a matter of it how extreme it is.

Not saying for your treatment addiction occurs in every case or that it cannot be turned down, but the question is how long did you last with this 25% reduction before you had to increase it again? Was the 2 hours your limit and then you had to? And if you perceive that you had to, it's legitimate as information. So you have gotten some feedback and are partially in the process of that discovery process in your specific case.

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Do you and your neurologist doctor understand addiction medicine where neurotransmitters and serotonin reuptake inhibiting antidepressants are concerned? It is conceivable, and some psychiatrists have insisted on it, that one may need to take up to 12 to 18 months to titrate off. Not in all cases, and some are much more tolerant of a quicker withdrawal. In any case the stages have to be small and gradual and patient.

But that is if you only want off it completely.

If you were merely adjusting, improving, for symptom excess, which it sounds like you were really trying to do, in light of this bit of feedback you have obtained I think you need to have a much more careful and minimal, gradual titration process to discover the increments you can tolerate. That would be the assignment. Say perhaps half of that 25% you tried before.

esorhanna profile image
esorhanna in reply toMarionP

Yes, I agree. If I try again it will be about 10% increments.

park_bear profile image
park_bear

No you are not being a coward. This problem is known as dopamine agonist withdrawal syndrome, "DAWS":

pubmed.ncbi.nlm.nih.gov/236...

"Dopamine agonists ... may have serious side effects, such as orthostatic hypotension, hallucinations, and impulse control disorders (including pathological gambling, compulsive eating, compulsive shopping/buying, and hypersexuality). The most effective way to alleviate these side effects is to taper or discontinue dopamine agonist therapy. A subset of patients who taper a dopamine agonist, however, develop dopamine agonist withdrawal syndrome (DAWS), which has been defined as a severe, stereotyped cluster of physical and psychological symptoms that correlate with dopamine agonist withdrawal in a dose-dependent manner, cause clinically significant distress or social/occupational dysfunction, are refractory to levodopa and other dopaminergic medications, and cannot be accounted for by other clinical factors. The symptoms of DAWS include anxiety, panic attacks...While some patients have transient symptoms and make a full recovery, others have a protracted withdrawal syndrome "

Trixiedee profile image
Trixiedee in reply topark_bear

Yes, your doctor really should have warned you about this before prescribing it.

esorhanna profile image
esorhanna in reply topark_bear

Parkinson's itself is hard enough to deal with, I don't think I have what it takes to deal with stoping this agonist right now.

ing

Lionore profile image
Lionore

My MDS, nine years ago, having diagnosed me one year before suggested this dopamine agonist patch. Luckily for me I have had issues with compulsive behavior and spent decades in twelve step recovery. I was not about to risk my emotional stability especially since my symptoms were mild. Yes the disease has progressed since then but I’m very satisfied with my c/l that I insisted on back in 2017 and I remain independent, just slow and somewhat fatigued during off periods. I’m 78 and perhaps if I had been diagnosed as a younger person I woul d have considered the patch or another DA.

Mechjack profile image
Mechjack in reply toLionore

IMO, it is very irresponsible for an MD to prescribe dopamine agonist to someone with a history of compulsive behavior. Those drugs are no joke. I can tell you from experience. And they were hell for me to get off of. I thought I was not a compulsive person, but it has a way of turning simple bad habits into compulsions.

Sydney75 profile image
Sydney75

It takes quite a while for Neupro to get out of your system using transdermal delivery. Cut down patch extremely slowly. This will take several months. My HWP is trying to get from 2mg to 1mg bc of excessive daytime sleepiness. It does help his RLS so hw is reducing by slivers every 2 weeks. You may need a temporary med for anxiety to get fully off. Most RLS folks on HU have talked about how difficult it is to get off. They have tons of good advice.

TheGimba profile image
TheGimba

Scary stuff, my husband experienced aggression and compulsions that almost destroyed our family. Docs could have mentioned what to look out for. I showed up in neuros office in a panic because my normally sweet, kind, caring hubby had transformed into someone else. Neuro was away on holidays, receptionist suggested that I call police. How helpful! Looking back I would try nicotine gum before agonists. If you use them make sure you have close family members near by monitoring your every move. Whatever your "vice" is it tends to get exaggerated, gaming? shopping? sex? I think stimulants are hard to control, to create balance. Nicotine seems to have stimulant and calming properties that other drugs don't. Just my opinion.

esorhanna profile image
esorhanna in reply toTheGimba

Wow, that's a lot to handle on top of everthing else that goes with parkinson's. Has your husband been able to get off the agonist?

TheGimba profile image
TheGimba

Oh, yes, years ago. We had a small child at home. Docs have no idea what a profound impact side effects can have on family, especially children. Found a third neuro who took him off everything other than L-Dopa. Keto diet, loads of daily exercise, lev/carb and nicotine gum have kept him working and pretty stable, about 15 years in. Keep your family close and informed.

esorhanna profile image
esorhanna in reply toTheGimba

that's great to hear that it all worked out inthe end.

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