Do dopamine agonists really have such rare serious side effects as is often rumored? Is it "only" impulse control disorders such as strong addictions to sex, gambling and shopping?

Or do we ourselves and those close to us have to pay very close attention to what changes in our behavior in the months and years after taking it, because behavioral changes happen gradually, go unnoticed for a long time - and can still have a major impact on life?

like private Dr. As Atbin Djamshidian explains in Parkinson News No. 50 May/June 2022 from Parkinson Selbsthilfe Wien, it was previously assumed that only 14% of patients were affected by behavioral changes when taking dopamine agonists. Based on recent studies, it is now assumed that that over 45% of patients develop impulse control disorders within 5 years of starting therapy develop.

This article corroborated my own experience and that of many others with Parkinson's disease. And also correspond to my observations in the community.

After the diagnosis in 2018, like many other "young" patients, I was initially only treated with dopamine agonists and antidepressants. Because due to professional overload and the diagnosis, I also suffered from exhaustion depression.

As the months went by I became more and more mentally stable and the agonists improved my physical symptoms.

However, I soon observed problematic smoking behavior. After the diagnosis, after many years of not smoking or smoking, I had started to smoke heavily again. And when I wanted to stop doing it a few months later, it was impossible for me. In the following two years I certainly made 30 to 40 attempts. Sometimes I stopped doing it almost every day. I dumped cut cigarettes in rubbish bins around the village and took them out the same evening.

I tried to keep smoking a secret from my children and sometimes also from my husband. And in front of myself too.

I hid or subterfuged just to get my cigarettes. I ended the evening cuddling with the children as quickly as possible, just to finally be able to smoke.

The children knew intuitively that I smoked, but silently allied themselves with me. My husband sometimes brought it up and at the same time was helpless in dealing with it. And even people I kept nothing from didn't realize the magnitude of my new addiction and burden.

I had never felt like this before. I was rapidly losing respect for myself.

At the same time, I developed a striking nocturnal activity. I was tired but didn't want to go to sleep.

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Contrary to my previous sleep-wake rhythm, I now started late in the evening – often not until around 22 p.m. – with all kinds of activities and only went to bed around 00 a.m. at night. A few hours later it was day watch again, the kids had to go to kindergarten and school. At night I tried recipes for healthy crackers, baked whole wheat bread, made calendula ointment, and fabricated oilcloths. Or worked on my photographic puzzle pictures. I built installations from small objects and photographed them. Despite my tiredness, I found pushing the small objects back and forth meditative. But these activities also had an addictive character.

During the day I was exhausted, had to function somehow and tried to rest whenever I could.

At the same time I felt driven, could hardly rest and couldn't sit still, always had to do something; I tried to be productive even in the smallest time gaps and worked frantically on my photographic puzzles. I often found the children to be a nuisance.

My family suffered from my behavior. For my husband, these changes beyond smoking were noticeable but not tangible. They developed slowly and were therefore not clearly evident and therefore not subject to discussion. A few friends noticed the changes but didn't speak to them. Or spoke to them so cautiously that I didn't hear them. wanted to ignore.

I told my neurologists about it - I switched doctors twice during that time. All three are capacities for the treatment of Parkinson's disease. My stories were registered but not further questioned. The topic of smoking was not taken up. Agonists reduced but not discontinued. And one even warned me that I had to pull myself together. Which of course is not possible with an impulse control disorder. This impossibility continued to eat away at my self-worth.

The good thing about this time: I had an overflowing creativity that could not be postponed. Everything wanted to be implemented immediately. And so within two years (!) I managed to self-publish two text-illustrated books and acquired the necessary skills during this time - basic photographic knowledge, photo editing, operation of a graphics program and much more. In the nights. This would not have been possible for me without dopamine agonists.

Salvation came in the fall of 2021 in the person of the next specialist. He listened to me, eliminated my agonists and prescribed Madopar for me.

Two weeks later I was able to quit smoking relatively easily. And started to sleep. I slept and slept and slept. For the first two months, I went to bed at 19:00 p.m., slept until 06:30 a.m., and went back to bed at 11:00 a.m.

I became calmer inside.

After two months, my sleep pattern settled down.

I had more energy again.

Daytime tiredness plagued and still plagues me despite getting enough sleep at night. But it was and is a different kind of tiredness.

I was able to take the necessary steps towards gainful employment again and started my own business.

The regular life I lead now is good for me.

Unfortunately, I don't have much time for my creative ideas at the moment. That's fine. I know there will come a phase in my life when creativity will take up more space in my life.

After many conversations with other affected people, I know that I am not an isolated case. Suddenly increased, inexplicable need to smoke. restlessness. nocturnal activity. Some neurologists hear it and react by changing their medication. Many don't respond.

I am not writing a pamphlet against the use of dopamine agonists here. These also undeniably have positive effects that no other group of drugs offers in this way. And some patients experience little or no side effects.

Some accept slight impulse control disorders and an increased urge to be active – or find this new attitude towards life to be pleasurable to a certain extent. Can integrate these changes into their lives because there may be no professional commitments or small children. And your partner can live with it.

I wish neurologists would be more sensitive to the topic of impulse control disorders. Would listen and ask more. Would not only draw attention to possible gambling and sex addiction before taking; many changes are more subtle, can only be perceived by the environment. An environment that addresses these changes. And is heard.

And for those affected, it is important to observe ourselves very closely, to ask those around us for feedback and not to give up on the doctors. It is our job to weigh up the degree to which we (want to) accept existing side effects. Or rather do without the undeniably positive effects of dopamine agonists.

Sophia Plöchl, February 2023

www.sophiaploechl.at

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