Neupro Side Effect--Gambling?

[badnights]

You have done well, and your husband has done well. I hope I never have to go through anything like that. Life is hard enough. I agree with Steve that your husband would probably appreciate the support and information he would get here.

He also needs to find out what it would have been like to get off of Neupro if his doctor had not taken this step. That will also increase his appreciation of his doctor...... Finally, I cannot say to strongly enough that you need to realize what a treasure that you have in his doctor

Seriously, he would be in a living hell right now, and you would be in agony watching him, without an opioid to control his symptoms.

Pay attention to the possibility of dropping the methadone dose in a few weeks, after the withdrawal is over. Withdrawal from the dopamine agonists entails a worsening of the RLS/WED symptoms, so when it's over, he might need less medication to control them.

[brevik]

My husband has been off of the Neupro patch completely since June 10th. Even though the "shelf" life for Neupro is relatively short, he was on 4mg for four years. He says he has no compulsion to gamble but I don't think he is completely in control Just my opinion. What I am wondering is this? Ok, Neupro gone but when does his Impulse Control Center and natural levels of dopamine (is this a factor?) come back to his brain? Four years is a long time. Thanks again for all of your comments and advice and insights. I talked with a professional in behavioral health which was something I needed. My husband and I discuss what transpired and he feels horrible that his actions or inactions have hurt me so terribly. It will take time but it was such a traumatic event. Hopefully, this Nancy Drews Super Sleuth Senior Citizen can hang up her activities forever.

[Rustsmith]

brevik, I am in no way, shape or form an expert on this, so there is a good chance that some of what I am going to say is incorrect. If I have messed something up, I hope someone corrects me.

But here is my understanding of the role of dopamine agonists OCD. Your husband was using Neupro to help boost the dopamine levels in the part of his brain that controls movements. For some reason or another, those of us with RLS either have low levels of dopamine or else the nerves do not respond like they should. Either way, the added dopamine levels help reduce the urges to move. Compulsive bahaviors issues occur in another part of the brain and dopamine also plays a role in this area. In the compulsion region, the added dopamine from the Neupro supplements the natural dopamine and can trigger compulsions in those who are susceptible.

After your husband was on Neupro for a while, the brain started to produce less of its own dopamine because the Neupro was always there. For his RLS, this meant that he needed more of the drug in order to control his need to move. But this also increased the dopamine to the compulsion area, which strengthened the compulsions. So he went from 2mg of Neupro to 3 and then to 4 or more. Once he stopped the Neupro, the dopamine levels dropped back to just what the brain was producing, which was probably less than his "normal" levels. That means that the compulsions should have stopped once the Neupro was out of his system, which only takes a few hours. This would have caused a major problem for his RLS, but the doctor gave him methadone, which for some reason helps to cover the RLS symptoms. From what I have read, narcotics are not normally used to treat compulsions, but have been tried with some success when other medications fail.

As for how long for his dopamine levels to return to "normal", it varies between individuals but natural dopamine levels generally start to swing back toward "normal" after about a week and should have reach that "normal" level after two to four weeks. This does not mean that the dopamine levels in his brain are dropping back to normal, it means that after he stopped the Neupro the dopamine levels dropped to less than normal after a few hours and have since been increasing to his "new normal" ever since.

[Polar Bear]

Rustsmith, an excellent explanation. Thank you for that.

[ViewsAskew]

There is an excellent podcast - Radiolab - that I listen to. Last week on my way to workout I heard an episode - Stochastisity - in which they talked about a woman with Parkinson's who'd started gambling. She was on the medication for many years - and within one week she had no desire to gamble any longer.

Highly recommend the episode in general and specifically because of this segment within it.

http://www.radiolab.org/story/91684-stochasticity/

[brevik]

Once again, you all are fabulous! I listened to the woman who has Parkinson's and also had compulsive gambling from a med. I got emotional listening to how she felt after she got off the meds and also identified with her son when he said he was relieved to have his mom "back." The explanation from Rustsmith is also so enlightening. The last patch my husband had was June 14th. I mistakenly wrote June 10th in an entry above. He seems to be "back" and I have explained to him what I need from him to get us both back where we were. Yes, our doctor is a treasure. We have our next appointment in our town and don't have to travel 60 miles to the main office which is located in the town with a casino. The methadone script is for only one month so he has to adhere to a strict regiment. He still thinks he could have just stopped the video gaming machines with will power and kept wearing the patches. He couldn't have and would have gotten worse. I think knowing this had a control over him freaks him out when he is usually a controlled person. THANKS again!!! What a treasure you all are to me and others.

[Rustsmith]

brevik, thank you for the very kind words. It is the opportunity to help people like you and your husband that keeps us all involved. Just the opportunity to successfully assist the two of you through this terrible ordeal has been by itself enough to justify the time that we spend here. So, thank you for allowing us into your lives and I am sure that the other will agree that we hope that you stick around so that both of you can continue to learn about RLS and maybe even someday be in a position to advise some else who finds themselves in a position similar to yours.

[ViewsAskew]

Exactly what Steve said.

Maybe once day we can meet your husband, too.

[Polar Bear]

brevik - your post of 29 June has so warmed my heart. Please do stay with us. As Steve said, one day your experience could be the saving of another sufferer. Thank you for keeping us updated.

[brevik]

I was waiting to post information after the one month appointment with the neurologist. Many, many responses on this topic ring so true, and I am sure it is because people have walked in my husband's shoes or been a part of someone's life who has RLS. The compulsion for video gaming machines subsided completely after about 5 days. The minor level dose of Methadone is working beyond our expectations. Is it scary to think he is taking Methadone but we have reassurances about it and his scripts are only for one month at a time. However, our neurologist had just returned from a conference in Denver when we first saw him a month ago and decided this was the route my husband needed to take. My husband is the most severe and difficult case our doctor has seen. Of course, he has always been a high achiever. He said Mirapex, Ropinole, Neupro are all DA's and will never prescribe them to my husband again. Thank, God.

Remorse, regret, embarrassment, and guilt are just some of the emotions my husband feels after the patch left his system. One of the posts said he would experience this. I have had a difficult time emotionally too. I could not trust him, his deceit was overwhelming, and financial security was no longer a given. But we are at a good place now. As husband and wife with kids, we are a team and suddenly, I was the lone ranger trying to find out what was happening with him. What the hell was going on. It was detrimental on so many levels. I could not count on him to be where he was supposed to be but that has all changed.

I saw a behavioral health counselor because I had situational depression--no energy, not eating, sleeping a lot, and every morning as I had my cup of coffee and watched the news, I cried. Of course, my husband felt even worse seeing me this way because I am not like this. One very interesting thing the counselor said at my second visit (have not gone back--kind of a wait and see if needed) was that this gambling event including seeing him leave a place after gaming was such a shock to my life just like a sudden/tragic death. Also, I was shouldering all of this info without telling any family and friends. It was jarring to everything I counted on.

Luckily, no real financial loss for us. He knows it would have gotten worse. He also said everyday he thought about how he could get to a place to place--very weird. It was escalating and knew he had an issue. Was going to talk to me about it but I beat him to it. LOL The neurologist said that since addictions run in his family, he was more susceptible to have this compulsion. He doesn't like it that our kids, some close friends and family know about this. However, it didn't seem to bother him when our car was parked at these local joints and other people saw him in there A LOT. Of course he was in the throws of addiction. His glazed look is gone. He is more relaxed. He is remorseful. What a helluva situation!!!

Thanks out there on the RLS message board. All the links, webinars, information, guidance, and radiolab broadcasts helped me so much. I am putting away my Nancy Drew Senior Citizen Super Sleuth sign for now. You are the best!!

[ViewsAskew]

Hugs to you both. Very happy to read this outcome. And, thanks to the Foundation for helping educate your neurologist!

[Polar Bear]

Thank you for updating us, so pleased that everything has turned around for the good.

[Legjimmies]

After the whole side effect from Neupro and visiting his neurologist, he was taken off the DA and is now on the lowest dose of Methadone. We definitely went through a lot, and he admitted to being completely addicted to VGM/slots. He also still take Lyrica. He was very embarrassed by the side effect results; I was very sad. What I have now discovered is that he is gambling again. In fact, while not daily, he has gone to some casinos. When filing our tax returns completed by a local accountant and submitted electronically, we are still required to sign the forms. Last year, there was one from another state which I didn't really question because I trust him. However, for multiple reasons, I looked over the forms for 2020 and found still another tax form from a neighboring state. On the form it says gambling and an amount. Another difficult situation came to my attention when I was told by a very good friend, that a few people approached her about seeing my husband in video gaming machine place in our town. I am trying to process all of this. When I confronted him about the gambling, he got angry and said this is the only thing he does for himself and didn't want to tell me because I would get angry. Geez, do you think??? My question is this--are there residuals in his brain from the side effects of Neupro a long time ago? I HATE all of this but I'm sick of this. I asked him if he was doing scratch offs and video gaming and he said no. Obviously, he is not telling me the truth. Thanks... Really wish I was over with this....

[ViewsAskew]

After the whole side effect from Neupro and visiting his neurologist, he was taken off the DA and is now on the lowest dose of Methadone. We definitely went through a lot, and he admitted to being completely addicted to VGM/slots. He also still take Lyrica. He was very embarrassed by the side effect results; I was very sad. What I have now discovered is that he is gambling again. In fact, while not daily, he has gone to some casinos. When filing our tax returns completed by a local accountant and submitted electronically, we are still required to sign the forms. Last year, there was one from another state which I didn't really question because I trust him. However, for multiple reasons, I looked over the forms for 2020 and found still another tax form from a neighboring state. On the form it says gambling and an amount. Another difficult situation came to my attention when I was told by a very good friend, that a few people approached her about seeing my husband in video gaming machine place in our town. I am trying to process all of this. When I confronted him about the gambling, he got angry and said this is the only thing he does for himself and didn't want to tell me because I would get angry. Geez, do you think??? My question is this--are there residuals in his brain from the side effects of Neupro a long time ago? I HATE all of this but I'm sick of this. I asked him if he was doing scratch offs and video gaming and he said no. Obviously, he is not telling me the truth. Thanks... Really wish I was over with this....

Oh, my. I don't know much about this - hopefully others can chime in. My heart is with you.