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Parkinson's Movement
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The hidden shame of drug-affected behaviors resulting from Dopamine agonists.

Dopamine agonists such as Requip and Mirapex can cause Obsessive Compulsive and addictive like symptoms. Documented research has acknowledged the facts. The problem is the data is skewed simply because there are so many unreported cases. The shame and embarrassment prevents PD patients from reporting truthfully the effects of these drug compounds.

I know of what I speak. It happened to me. I would like to provide this blog to be a safe place to ask questions and share experiences regarding this phenomenon.

Dan

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Since I have been on this site I have not seen any hiding, skewing or distorting of facts regarding any subject. Personally, I was prescribed Mirapexin and the notes in the meds box did warn of possible OCD. In my cse, this has not happened. My only addition is to this site.

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I had nausea, swollen ankles and sexual, eating and computer compulsions. Got no sleep and gained 40 lbs which I lost when I went on sinemet. I come from family of alcoholics. Maybe there should be more research.

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It certainly has heightened my obsessive nature but I am fortunate that it is just video games for hours on end and not anything more damaging.

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Hi DrDan

This is a very hot topic in the UK right now with some PD groups. There is strong debate about the pros and cons of publicity, precisely because of the shame and embarrassment associated with addictive behaviour.

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I did buy a lot more clothes than I usually do (which is nothing!)

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When I was diagnosed, my husband went with me. The dr. did warn us about possible compulsive disorder in some patients - shopping, gambling, etc. Of course, we didn't think much of it. After all, medications come with many side effect warning . My husband even joked " if she comes to have compulsive shopping, I'll just have to develop compulsive returning" lol, Well, it wasn't funny when I started going out to the casino in the middle of the night and sneaking back in before I went to work. Totally not like me at all! Eventually, my dr. took me off the dopamine agonist, Mirapex, and I have not had the problem since. I've been happily married for 27 years and we've had only a few fights that I can count on one hand. This strained our relationship and it was hell! I just thank God that my husband understood.

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oh gee, I must be getting an agonist from somewhere.

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It is not a big problem with my husband, but certainly traits do appear as in he now likes bingo is more competative at times and can be more compulsive when shopping, could spend more than we need to when medication working in full flow.

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i take mirapexin and i would like to say that my love of the slots in casinos was under control but i dont think it is. i also feel that the mirapexin makes me feel worse if anything..

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yes i was part of this and my docs wanted me off requip....went thru hell with withdrawal symptoms

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Fortunately, although Ive been taking Requip for 2 years, this hasn't happened to me. Perhaps its because Im on a fairly low dose, 22mg daily? Perhaps Im just one of the lucky ones? Id be interested to know what doseage others are on if they have had addictive problems.

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I can tell you that Mirapex at 4.5mg has caused compulsive behaviors for me. I was warned by my neurologist that this ould happen, but I didn't realize I was affected until I had gone through literally thousands of dollars!!!

I also have a freind across the ocean who has suffered extreme humiliation after sexually compulsive behaviors. Haven't spoken to him in a while, I can only hope that he is doing well.

It seems I have controlled the shopping to some degree, I suppose it is because there is nothing left to spend. What remains is the sense of being an idiot! Not to mention financial instability.

I am looking forward to discussing the Neupro patch with my neurologist.

Believe it!!! These drugs can and do cause life altering compulsive behaviors.

God bless

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Thanks mccshe,

You "get it"

Blessings on you

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Yes. I can definately say that the dopamine agonist/ replacement therapy medications, at least for a ceratin % of users, have seen my side of the "Impulse Control Behavior disorder" These include sexual but also shopping behaviors. Who else in their right mind would trade and purchase a total of 6 new or good use vehicles 6 consecutive yrs in a row? No wonder my dealership loves doing business with me at a good interest rate ~ 5-7% even despite my recent chapter 7 bankruptcy discharge just 7 months ago and my house forclosure in 2010. As for the sexual impulses well, I'll just make mention of it without spelling the details. But think of it this way: if one were suffering from erectile dysfunction, and wants to take something to help him, forget about paying too much money on viagra or cialis or others like them, instead go for the libido stimulator medication that [ only affects ~ 30% of users ] may only cost you ~ $7 generic with proper insurance coverage instead of the hefty priced erectile dysfunction medications. It's guareenteed to drive your spouse up the wall in both a good sense but also in not a good way.

Folks, as you can tell, I'm intentionally trying to be sarcastically funny here but it is indeed an actual true fact that will affect your behavior in a negative way if not controlled or taken off completely. I'm not really proposing taking this med to help with any erectile dysfunction problems affecting you or someone you know but just wanted to point out how this med really can affect your behavior impulses to unpresedented proportions to your dismay. Lucky for me my wife is still with me. That's all I have to say. Just my experiences with these type of medications to help those who seek answers and to share my part of it so maybe I can help others somehow.

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I couldn't agree more.

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What $7 medication are you referring to?

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I am avoiding agonists like the plague ... I "know" I would be in the 22% that get OCD big time.

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Beachdog,

Thanks for your reply. It takes courage just to say "I know." I'm sure you are helping those around you who may not "know."

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We know that agonists can cause OCD behaviours,the problem from the PWP point of view in the past was being believed.

I think that the awareness level within the PD community is high.The problem with raising awareness generally. PD,with its cardinal symptoms can result in isolation because of a lack of understanding. This then is an added problem that is doing some of us damage as individuals A consequences of coming out as a collective,could result in us being labelled unfairly by the media and unfortunatley its what people remember that matters in terms of effective or adverse publicity..

Compulsive Extremes gambling hypersexuality v perhaps more controlled,perhaps less damaging Addictions, shopping and computer usage .So how do we and the medical profession begin to understand all of this more importantly were is the help,the help now is forums like this .

I take requip up to the maximum level [8yrs now] and a small amount of slow release Co-carbedopa,I have compulsions there is no denying.Im aware that I walk a tight rope and could fall off at any point.

''Documented research has acknowledged the facts'

.'Sounds almost like it gives the medical profession permission to believe the patient,especially now drugs come with a warning,to protect the drug company and the PWP not in that order I hope .

'' The problem is the data is skewed simply because there are so many unreported cases.''

So existing data doesnt give a true representation of the problem,because of failure to report by the PWP and the Medical profession both still fail miserably to answer/ ask the question,without coughing. Personal discomfort lack of education and lack of a procedure and resources for dealing with it.

'' The shame and embarrassment prevents PD patients from reporting truthfully the effects of these drug compounds.''What does the system offer the embarrased and honest. Educate and include research often fails to marry the two.

I agree in principle with the issues but given the sensitivity and extent of the problem,what could we achieve by blogging it here is perhaps even to public for some and to haphazard

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Thanks for your comments. I tried to address your last comment on a post today (04/09/12).

I'm not looking for gory details. My hope is that someone about to lose their marriage, money, reputation, job, or sanity will read our comments and go to their doctor and start talking even though they may feel foolish, guilty, etc. That's all I want. Let's keep the awareness there so we can prevent rather than witness the tragedies.

Dan

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I think your right raising awareness in house is a good intervention strategy..How do we keep a blog alive here in awarenness terms it needs to be a front line blog everpresent and visible In order to prevent and support those tragedies you mention which are real and sadly many of the partys involved only reveal when its to late.What are the odds/stats on agonist users developing disordered behaviors,I wonder,Ive taken ropinerole 24mg for meny years,I am thankfull for what its given me but not complacent about whats to come.

Thanks

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Pixie,

Word of Mouth is the best strategy. Blogs like this are a form of that. Perhaps a shout out once in awhile to teach us and remind us to tell others.

For example, a friend of mine who lives in Kansas City recently told me they are taking Requip for Restless Leg Syndrome and it's working great.

I'm happy for her. I'm not going to tell her to stop taking a Rx that allows her to sleep at night. I'll just find a way to let her know there are side effects for every synthetic (created by humans) chemical taken into the body. I may chat with her husband and ask "how's she doing?"

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When I was on Mirapax, I would wake up at 2 or 3 in the morning and HAVE to cross stitch. Even when traveling in the van, I would hold a flashlight in my teeth in the sleeping bag and stitch away. I'm on ReQuip XL 4 mg. now and I can't stop sudoku, crosswords, stitching, quilting or just keeping my hands busy. I was on 8 mg before the biking and had stronger compulsions plus dry mouth. We have a lot of pretty outcomes from the obsessions and my mind stays pretty sharp with the puzzles. It's the weirdest sensation to not be able to stop. I do feel more normal, less obsessive, after riding the bike for what it's worth.

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sounds just like me. if its not cross stitch its kniting.today is sunday, i woke at 3 and picked up a lovely cross stitch and its now 10pm. i only stoped to finish a scarf i started knitting for mum, ( only bought the wool friday) this month alone i have made 3 small cross stitch cards.completed the front of a latch hook cushion. just have the borders to finish on an arran cardigan and have ordered a book on how to make felted handbags. plus i work full time. i always did crafts but not to this extent. only been dn since jan, my mirapixen was doubled few weeks ago, this is when my sleep problems started. but as you say we have lovely things to show, but the feeling that you would rather stitch than meet friends for lunch. i really do need to sleep .

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i started crochetig about 6 months ago, found myself compelled to make things. I do it continuously and find it to be therapeutic. Am I wrong seeing it in that light?

When i cant sleep ...I crochet, when my body is too tired to cook , clean , or do the laundry ...I crochet. I've made 5 or 6 scarves, 2 afghans, and believe it or not, I just put down the 2nd baby blanket I am currently working on. At least it is constructive behavior..

Tomorrow I will give my coworker the baby blanket I am finishing tonight. Her daughter just gave birth. Last week I gave a different coworker a blanket for her daughter who just had her first child.

Keep in mind ,I taught myself how to do this just 6 months ago. It takes quite a while to make a blanket or afghan. You can only imagine how much practice I must have had to be able to now make things that are nice enough to give as gifts.

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You may already be aware of the research at the Cleveland Clinic regarding cycling and PD.

here's a link to check out. Look on the side bar on the right and click on "Cycling and Parkinson's"

theracycle.com/why/?gclid=C...

Dan

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you need to get a clip on LED light to save your teeth. My daughter who has a TBI (traumatic brain injury) following removal of a brain tumor has developed "perseverations" to knit, crochet, felt and forgets to eat, etc. Very creative and talented, but hard on relationships. Maybe scientists will find a relationship between these problems!

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To some degree I wear blinders. What I mean is that I do not go hunting for aberrant behaviors. I do use sane judgment, example, I am definitely doing more on line shopping, but not going into debt, or indulging in my sweet tooth but not buying large quantities of cookies. I just reread what I wrote, sounds like boasting, when I know it is a blessing (among all the curses I carry) that I can resist, and we are trying to share so that others can identify. Early after my Dx the neuro in NY gave me a series of meds each of which I could not tolerate. I was too much in a daze at the time to know if any were agonists, I had to look the word up in my dictionary. By the By I still haven't figured out who is who among Health Unlocked, PLM, 23 and me, and I forgot. Can anyone provide me with a GPS or do I start another blog page with the request?

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Yes I was on Mirapexin and developed a Gambling addiction. Am off it now ans don't have a problem but I didn't mind the sexual addiction although my wife got a bit fedup with me.!!! :-))

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All of these comments are completely TRUE! I come from very addictive roots and the

Mirapex cost me a BK of $50+K. My Neurologist knew after the fact and I was living alone and didn't realize what I was doing! Don't let this happen to you! Please don't be secretive or ashamed talk with your Physicians and change your meds!

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MGirardi,

I'm so sorry about the events that occurred in your life. Your advice was spot on. Have you had any "relapses" after ceasing to take Mirapex? (see my post on 04/09/12

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I don't fight spending anymore. The new fight is with food.

Now, at 40 lbs over weight, I don't live alone anymore and I'm

far more accountable. My GP and Neurologist seem more

sympathetic than anything... So many things in day to day life

pull me down & prior to the PD diagnosis in 2007 I wasn't so

fragile. Food is a comfort to me and I KNOW that's a sick thought. Thanks DrDan for the support. I'm on sinemet, neurontin, xanax, zoloft, temazepam, artane, and mmj indica/kush rarely (legal in CO w/ red card). I would like to take that 3rd SInemet but I tried to (per Doc) and dyskinesis went

crazy bad. So it's pm tremor or pm dyskinesis?

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Thanks for your response. I admire you for taking control of your life and not merely relying on meds.

you said the magic word: ACCOUNTABILITY

It doesn't mean judging or private eye spying. It simply means a trusting and safe relationship with another who has the right to ask, "How you doing?" and you know you must answer truthfully - completely. Then your accountability partner or group asks, "How can we help?"

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I have OCD with sex as the problem. I feel bad for my wife who has to put up with me. I just finished a clinical study at Penn in regards to this exact problem. I am glad they had it otherwise I just would have thought it was me.

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Patrick,

Could you reply with an email address of a contact person running the study? tell them i just want more info regarding their research.

Thanks,

Dan

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Dr Weintraub at Penn. 215-349-8207

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I've been on Mirapex for about 11 years and don't seem to have OCD problems.

I had problems when I took Sinemet. It's the l-dopa drugs that scare me.

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A question for all of those who developed impulse control problems:- did you spot your behaviours or did somebody else finally convince you that there was a problem?

Sue

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Great question Sue. In my case the compulsion to do these things was an overwhelming power that seemed ever-present. I was aware of the behavior and continually thought I could "quit any time." It was my wife who confronted me and then we reported it to my doctor who said, "Stop taking that Rx immediately." I knew I had a problem and yet was powerless to resist the compulsion.

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we both did

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Sue, that is one of the issues. I justified my behavior and my husband was unaware of my sneaking out at night to go to the casino. Once he found out, we saw my dr. and he explained that is usually the case. He suggested my husband keep a close watch for this type of behavior because I honestly didn't see a problem until it looked back and realized I was not myself and worked with my neurologist for help. Fortunately, I'm now off the Mirapex and have not had a problem

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I knew it. No one noticed. (or if they did they said nothing)

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I take 6mg of Requip each day and have done for about 18 months. I have not noticed any addictive traits, but my husband says that I am always on the computer so perhaps this could be counted as one.

Luckily, I do not gamble and am not a compulsive shopper, at least not for clothes, although if you saw my store cupboards you might say differently. But this something I have always done, long before I was diagnosed.

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The purpose of this blog is to increase the awareness of the Parkinson's patient as well as the doctors. I appreciate all of the comments they are helpful. Pixie had it right

My concern is for those who have not realized their behavior has changed and the problems that they are experiencing are due to the drug not to themselves. 

I am concerned about those who are too ashamed to admit to their family friends and doctor that they have a problem. I have read too many accounts of people who have lost their savings, their marriages, their families, their reputations just because they're taking the wrong drugs.

I was sent a letter from some attorneys who were trying to proceed with a lawsuit against the makers of the drugs. The burden of proof, of course, lies with the patients and the doctors who (understandably) are afraid of lawsuits against them.

We must continually Talk about the issues and increased awareness so that others do not suffer.

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Of all the research I've tried to monitor after my hellish experience with dopamine agonists - specifically Mirapex & Requip - the reported number of cases is relatively low and mention shopping & gambling obsessive or addictice behaviors the most. I believe the numbers are low due to the fact that HYPER-SEXUALITY is the least reported symptom because of the social stigma attached to these behaviors. It is far easier for PWP to report "I couldn't stop gambling, shopping, etc." than it is talk about inappropriate sexual activities which have moral, spiritual, and even legal ramifications.

Another area that may deserve a separate blog is "Why do some of these behaviors immediately stop when the drug is no longer in the body while some continue despite the absence of the drugs?"

Is it possible that pleasure centers of the brain have been "awakened" and do not totally go into remission?

I have had some behaviors that stopped as soon as the Rx was withdrawn but seem to struggle with others that threaten to haunt me from time to time. Is this chemically induced or just a matter of lacking self-control?

I'm interested in your thoughts. (Please, no inappropriate or details regarding sexual acting out) Has this happened to you?

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It's not exaggerating to say that my life has been destroyed by agonists. I became compulsive, unrealistic, risk taking and lost all sense of judgement. I didn't gamble as such but risked so much for so little. And lost. I displayed the classic signs but this was 2004 and no one recognised them. Instead I lost my marriage, my security, my home - everything of any meaning to me. I eventually realised myself what was happening and refused to take agonists. But it was too late. I struggle everyday to cope with the terrible consequences of agreeing to take these drugs. It just gets harder to think that without them I might still have a happy and secure marriage.

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WOW! Thanks Pen. Your testimony to the power of brain chemistry is incredible. That is exactly why I am obssesd (pun intended) with getting the word out. My wife stayed with me when I gave her so many reasons to leave. The GUILT & SHAME that remain after the drug is out of your system and your behavior returns to "normal" is so difficult to handle.

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It is interesting that a lot of impulsive activities seem to involve repetitive actions, a kind of loop....

I do not think that these are solely caused by agonists, as I am on l-dopa and also have internet and computer issues, which I know are related to clicking. I feel that PD may predispose us to it, and the drugs give us that extra push. I find it hard to stop activities, and though I hate housework using a vacuum cleaner can be hard to stop!

I guess I have not been affected by some of the more controversial activities, but nevertheless know that I am not always in control of my mind or my time. I also like to make art which is repetitive, which reminds me of the cross stitch that one person describes, I would do hours of that, and not notice the time at all. So compulsive too.

I guess it is a real problem when it is pleasurable to do but other things don't get done or it intrudes on the life of others. I have a daily computer routine that I go through, it gets longer each year, very ocd. I did not have this till relatively recently, and associate it with the addition of entacapone which is getting more l-dopa to my brain. I have replied knowing I do not have an agonist issue, but believing that the whole picture needs to be looked at i.e. is it a problem for people on agonists or do others with PD have some degree of these behaviours too, and if it is inherent to PD are agonists the thing that push people to extremes, rather than being the sole cause of impulsive behaviours.

My sympathies are with anyone dealing with difficult behaviours. I think the PD community should take the bull by the horns so to speak, and be open about the issues, though clearly each person will try to manage their life differently. The problem with this is that very often the affected person may not be aware or able to stop and without the right information, family and friends will not know what to do to help, or even that it could be PD/medications, and therefore not even have a starting point to discuss the problem.

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Lindy,

You are so right regarding nonagonist behaviors. I know we need to keep a balanced perspective on the issue. Did you read the PDF I referenced a few posts back? I think it articulates it well.

Your last sentence is spot on! I would be bankrupt and jobless if that friend had not sent that article to read.

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Thank you DrDan for your great link to the article by Laura Marsh and Patrick Callaghan. Laura Marsh's reputation goes before her in terms of the non-motor issues of PD. The more people who know about these problems the better, we cannot always be objective about our condition, that is part of what impulsive,obsessive,compulsive conditions are. If people know this is part of an illness, and not wanton behaviour then a lot of personal damage can be avoided. Anyone who has even a hint of these behaviours should read this article, though I urge them not to get too anxious about it, it is meant to help not harm. It details how to get help, something that shame and fear often lead to people not doing. In some places this help may not be easy to find, but perhaps this is something that can be campaigned for?

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From what I've read there are some who suffer with impulse control and OCD problems regardless of the type of meds they take.

I remember parking my car outside a place I had no business going into and praying, "God, please, help me put the key in the ignition and just drivehome."

In spite of the risks I "watched myself lock the car and go in the building."

Afterwards - shame, guilt, a feeling that "i'm losing it." Lying was easy and even though I was telling myself that was the last time I already knew my brain was telling me, "the first time we get an opportunity ------." It was hell to live like that. And I never suspected the medications I was taking. It was a friend in Florida who sent an article about the side effects that my wife and i put it together. Then we went to the doctor.

Dan

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Interestng discussion and Lindy Your blog is of particular interest to me. i had one of those aha moments! I have been on agonists three years but it was the addition of L-Dopa medication that seems to have taken my computer overuse to an obsessive level.

You describe the click feedback loop while i have been thinking about the reward system. I surf the net looking for an answer to an unsolved mystery or answer to a question. I waste hours but there is the occasional 'win' which is enough re inforcement to continue.

I have a classic example right now. As i was writing this i got a call saying my computer was infected. I continued the conversation to get as much information as i could while knowing it was a scam. Now i am off to spend a few pointless hours surfing the web to find out who they are. What a waste of time yet i can hardly wait to begin!

After that it will be looking for research on OC problems and parkinson meds. That will take up much of the day i imagine!

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Hi, Hikoi,

It is the reward - you click and get something, click and there is some more - it all just appears. I am a big reader, and love research, and this absolutely fills my needs, but sometimes I can find myself almost limp with exhaustion from not being able to stop, tired out at four in the morning, hanging over my computer looking for just that one more thing!

I also wonder if as we become 'less good' at doing things whether this reward thing isn't reinforced emotionally as our self image changes.

I feel useful when I am finding out about things, and learning, but not when I am being ineffectual while shopping or going about ordinary daily tasks. Reward is a very mixed bag.

A PwP who I regard very highly has spoken and written in the past about the need for neuropsychologists for PwP. As I get further into this journey I tend to agree with her. Sometimes we need to be able to know how to invoke helpful strategies that will help us and the people around us.

Lindy

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Spot on. Interesting and useful discussion. Thankyou DrDan for starting the thread.

Though PP said the awareness level in the Parkinson community is high I am not so sure. I know my PD nurse asks every visit which is helpful but like other subjects that have been taboo in the past ( eg mental illness,) it was a wider community understanding that helped those affected to recognize their problems, not feel ashamed and to seek support. It is certainly a dilema we face now about the best way to raise awareness without the whole issue being sensationalised by the media.

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The good,the bad and the ugly of agonist therapy,the issues are many both positve and negative

The tragedy is the devastating impact they can trigger in individuals and the damage that goes beyond their actions, forced to reveal, because when the crisis erupts they have reached a point of no choice ,enjoyment the pleasure seeking overides compulsion controls what you do and is not enough, the need is more discovery inevitable

In the clinical encounter with nurse or neuro, revelation is not easy and when it comes,what relief comes with it already wives children friends employment, innocent and undeservingly caught up in a problem created by medicines that are prescribed to help.

The problem is real and complex,a long term management, initiative is needed to support the consequences. For the majority realisation only comes with the inevitability of discovery,by then much damage is done and acceptance and its horrors are forced adding to the burden of all that is PD

We need positive support programmes,not just removal/reduction in meds.

Recovery and living well with illness is the goal we all need to have to aim and sustain our hope for the future, coupled with prevention and detection strategies and new drugs to balance the undesirable triggers and side effects to our complex brain chemistry is a realisable target

I am fortunate an agonist maximum dose user of mmany years. they cause me some problems, but I have a quality of life, thanks to those drugs. Yes that could change. I am educated and aware. I am not blind to or disbelieving of the plight of those who suffer the unfortunate catastrophy of behavioral problems triggered by these medicines.

We all have different medication needs,different responses to those meds..but treatment options are limited ,we have few choices,Im aware and grateful. for what those meds do,but I dont take it for granted, My story could be different tommorow.

Its not about indivuduals,but it is about action, understanding, education awareness a way forward.

The truth is the professionals in the clinical arena and industry need our guidance our lived life experience stories good bad and ugly will help future support and control of the agonist issue.I we are experienced representatives of this issue not just victims

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This is a lengthy post but I believe it is entirely relevant.

What I feel is needed is for somebody with some influence to tackle the problem and actually do something positive about it. I am more than willing to help if I can, it requires patient inclusion hence I have written about my experiences to give my views credibility.

Ok here goes:

As PWP we depend upon our drugs.

For the majority they are an "invisible wheelchair." we can’t move without them.

Until we have a better alternative we have dopamine agonists (mirapexin, requip etc.) and levadopa (sinemet, madopar, stalevo etc.) as the main drugs to combat the effects of PD. These drugs are effective but they have serious side effects. The main problems are behavioural disorders which ALL these drugs can cause and dyskinesia related to levodopa only.

I believe that if managing these problems is the biggest issue we face as PWP.

With regard to the behavioural changes caused generally due to agonists but also prevalent in other drugs we take.

I HAVE YET TO COME ACROSS A PWP WHO HAS NOT HAD SOME FORM OF DRUG RELATED BEHAVIOURAL PROBLEM. (Sex, gambling, eating, shopping etc).

NOTE IT ONLY IS A PROBLEM WHEN IT IMPINGES UPON YOUR LIFE.

My experience with mirapexin:

Diagnosed in 2003 I was titrated up to 2.1 mg of mirapexin. This dosage was increased steadily until 2006 by which time I was taking 8.4mg. Maximum recommended dose is 3.18mg. At this point sinemet was added. I continued on this regime until 2009 when I reduced mirapexin due to behavioural side effects causing problems affecting my life.

I will spare the gory details but in essence this is what happened to me (NOTE anyone who wants the gory details should be avoided. Most likely they want to know for their own advantage)

It started with porn. The usual “healthy” interest in top shelf magazines increased steadily until fortunately I discovered the internet. I say fortunately because had I continued buying magazines at that rate the ceiling of my house would have collapsed. The internet makes things more accessible, it provides an accelerated dopamine hit which fires the compulsions. By this time the actual subject matter had lost all relevance, I was viewing images without emotion, it had replaced work. Instead of going into work, to scour contractor’s accounts for discrepancies, I was measuring nipple diameters and buttock angles in my search for ……. I can’t even tell you what it was I was searching for because I didn’t know.

The risks involved fired it and the lack of conscience that prevailed allowed me to do as I pleased.

When I finally realised the cause I celebrated it as an excuse to continue, blame it on the drugs!

By this time I had moved on to chat rooms and here it does get gory so I’ll save you that detail. (For the benefit of the over curious, the letter pages of Fiesta magazine will give you a flavour)

Suffice to say that the introduction of sinemet gave me the physical ability to do what the agonists only dreamt of……..sigh! Happy days!

That’s how it seemed. I was happy.

Circumstance allowed me to get there unmonitored. Divorce and a new relationship masked my activities. My company trying to help me inadvertently contributed to my downfall me by giving me a laptop and telling me work from home when I felt like it. This led to my doing less work and more my own thing!

So how did it end?

I reached my bottom line. The point at which I able to override the separate identity I had created and become me again. I was moved back to head office and basically it became obvious what was happening. I had to come clean. It ended my career and I went on to long term sick on half pay. Luckier than most who get nothing! My actions nearly gave my partner a nervous breakdown and contributed to our eventual break up.

I came of mirapexin because I had to not because I wanted to. If I had not needed the money from work I would probably be still continuing the same way.

I eventually reduced Mirapex to a low level dose which prevents irritability but does not cause me too many problems. I know several who have gone “cold turkey” not a nice experience.

Reducing or stopping the drug does not take away the behavioural changes overnight. They become learned, often used as a defence against anxiety. It does however seem to reduce the obsessional behaviour.

The bottom line is the key. At what point will you admit to a medical person who has the power to stop it. It’s difficult to stop. I knew if I didn’t come clean I wouldn’t be able to carry on what I was doing so it was tied up with my own behavioural issues. I would not have stopped voluntarily.

This is the crux of the issue.

You can provide all the support and monitoring before the drug is taken and in the aftermath but without the person stopping it goes on.

Monitoring is useful but circumstances change so there has to be consistency.

It creeps up on you. Behaviour needs reviewing regularly.

Others may know of the situation, talking to a friend may reveal issues but having no power to act on their behalf allows it to continue.

We need a system that allows us to “blow the whistle “when we have concerns. It has to be seen as help and has to be agreed and signed up to before taking the drug.

It would help if we could refer to an independent person with the skill and understanding to get the affected person to deal with the problem

Whether provided independently of the neurologist team or contained within it needs to be a regular feature of an appointment so that it is not seen as a “victimisation” of the individual.

People could be nominated as care support ie friends and family. They could then be able to phone the designated person to voice concerns which could be dealt with at clinic without isolating the PWP with behavioural problems.

The person then could bring it up at the next meeting.

Training would be required which should utilise the experiences of people who have had behavioural issues caused by the drugs.

We need to move on this as a matter of urgency in my opinion.

Leyther

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I have found no one listens, as the wife of a PWP, and someone who has seen first hand how devistating the cumpulsive effects of these drugs are. My husband doesnt acknowledge how the drug has changed him, and the doctors do not care what I say. They just keep prescribing the drug. My husband with Parkinsons (who has two small children) now thinks he deserves to drive up all the credit cards, spend with abandon, not care how he steals from his kids, and oh yes and cross dress to calm his anxiety.

Parkinsons is terrible, but this is a nightmare,

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I can see this post is 6 years old. I have just read it and wish I could save it or print it. Do you know if any of your suggestions of how the medical profession should monitor pwp taking agonists have been implemented? My daughters consultant told us recently that he had now stopped prescribing agonists!!

I have been so angry with the professionals who were treating my daughter. They asked her at every appointment if she was experiencing any compulsive behaviour and she lied. She was a young widowed single mother and attended all appointments on her own. THEY SHOULD HAVE INSISTED SHE HAD SOMEONE ATTEND APPOINTMENTS WITH HER!!!!when her gambling was eventually out in the open she had to sell her house and lost all her friends. She has subsequently had DBS which has not worked and has now been considered for Duodopa procedure. It is amazing to hear/read about the extent of this problem caused by drugs. WHY IS IT STILL HAPPENING AND THERE IS NO PUBLUC OUTCRY????

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Leyther,

Well said. Your post should be placed in the hands of every PWP, every doctor and every PD foundation on the planet.

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Thanks for that Doc

If it wasn't for the subject matter' I'd have the posting framed along with your endorsement' to show my mum.

Joking apart though. This needs to be moved on. Rather than just another collection of wise words on the subject, we need action to make the necessary changes come about.

I have already written something that could be use as a template for discussion base on mine and others experiences with this matter and I know of several people who would be more than willing to help.

We need to get the message through to the neurologists and their teams so they understand how patients are affected.

It's largely about communicating to the teams the nature of the problem and presenting them with strategies to deal with them.

We need someone who can push this forward at the right level.

Any takers?

Leyther

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This is the problem with blogs

An important subject is raised and just disappears on the treadmill of blogging

Is there a place where topics of concern could be kept prominently?

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Leyther

Thankyou for asking this. The simple answer to your question is not at present but likely to be possible in the future.

This site is hosted by health unlocked and over 30 health groups currently have forums here. A number of issues about how the site functions have been raised by user groups. Health unlocked developers are responsive to requests and are continually upgrading the site. One request is to be able to make 'sticky topics' and another is to keep popular topics prominent as you suggest.

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Thank you for your prompt reply

Much appreciated

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hi

i have psp and there r jn omeds for it

re compulsvie behaviour

i do online solitaire and othercard games )by myslef and for myself but nto 4 ££

i find it so difficult ot stop and am desperate to bea j my own record ineach one

any answers and find it hard to switch the cojputer off

i justify it in the early ams to chek how miy eyes r iwth the conputer on

b4 i gor my diagnosis i did not iknwo tha ti ahd aproblemwith double vision /downgaze etc

lol Jill

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I appreciate your comment Jill. I encourage you to research it more and talk to your doctor about alternative medications. Remember, some of us are playing games (in fact some are encouraged to do so daily to keep the mind "in shape") to slow the effects of the progression of PD and the onset of AD

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Jill

If you are able to contact your medical team and let them know you have this problem.

If you cant easily stop, then write a letter to your neuro explaining and post it, at a time when you feel you can

online games are regarded as "minor" ocds but if you are spending time that is detrimental to your day then that is destructive behaviour.

feel free to pm me if you need any more info

Leyther

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I too was warned about the gambling threat and when it came, not I or any of my family recognized the problem as being one that I could not control.

I am prescribed this medication for what is described as a form of Parkinson’s . Prior to diagnosis, I endured 4 years suffering with Cervical Spasmodic Torticollis Dystonia which took on the form of my head tilting backwards for no apparent reason. For me, Mirapexin is a wonder drug as no one would know of my disability.

Now that it is apparent the drug can cause innocent people to develop the gambling disorder could someone please let me know whether there will be any compensation in the NHS/Government pot to help those effected who find themselves in financial debt following this drug being prescribed.

I began frequenting the gambling online sites on a regular basis about a year ago. I won and I lost thousands but the biggest loss that I will never ever forgive myself for is that on one particular session, I somehow got lucky (I use that word lightly) and over a 24 hour period of just choosing whether the ball would fall on red or black , I knocked up winnings £87,000.

I was determined to take it up to £100,000 before I would allow myself to stop. Huge mistake, my luck began its slippery downward slope until I had gambled the last pound away.

Now it wouldn’t have been so bad if I stopped there but oh no, I convinced myself that I had got the winnings up to a life changing sum of money before and I could do it again so out came the plastic credit cards!

I am trying to keep it short (no pun intended) but my debt now stands at over £36,000. Both my partner and I lost our jobs through redundancy earlier this year so guess where my redundancy package went! I now have my flat on the market, my car advertised on eBay and I used a pawnbrokers for the first time in my life just to get enough cash to put dinner on the table.

This may all sound like I take no responsibility for my own actions but having fought and won a throat cancer battle before my addiction started and having since lost the respect of my family because of this, I am feeling a little sorry for myself right now so if I can rest the responsibility at the foot of the NHS/Governments door for not carrying out enough trials on this drug before it being prescribed then so be it!

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My husband has parkinsons and he has been on the Neupro Patch for 4 years.

It has turned him into another person. And he does not see how the drug has changed him. He is angry and suspisous of me all the time. Thinks I am against him. He started cumpusively spending money (and hiding the fact) then lashes out in anger if I ask about it. Next I find out he is cross dressing first in secret and after the doctor upped his dose of neupro he wants to do it publicly. He doesn't sleep but two hours a night, but he falls asleep mid sentence at other times durng day. He doesn't see the connection to any of these side effects to his prescribed drug of choice. He recently blacked out while driving our young daughter home from school. By the grace of god no one was hurt or killed. Car totaled.

He still doesn't connect the nuepro to the side effect. And the Dr. doesn't want to take him off the patch since the "patient" is happy with the results he gets from the drug

You see the nuepro stops his tremor. Dr. even thinks with minor adjustments to meds he should be able to drive again.

I am not the one with Parkinsons, but What price do you have to pay for not having a tremor? He is on the verge of breaking up our marraige, destroying our two small children (and he doesn't care - he said they will adjust) He has driven up all his credit cards to the max, has no concept of what it is to budget and with his cumpulsive irratic behaviour he wont survive long on his own pursuing his fettishes. And the Dr. thinks this is OK, because the Dr. wants the patient to be in charge.

Either the Dr's are clueless about the true effects of these drugs or they just don't want to recognize how destructive they are. It seems criminal to me to continue prescribing a drug that will ultimately destroy someones life.

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Since we do not have stickies, I took the liberty of bumping this string to the front. The information contained here-in is something that everyone who is taking PD medications should be aware of. I am constantly monitoring , aware that obsessive behavior can start at anytime, but I think I will double check with my wife , maybe it has already begun. Diligence is necessary. If you have not read this string before I suggest that starting at the beginning is well worth while. Thank you DR. Dan

Jim

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Thanks for that post,, I have been looking for some input on the same situation. After reading the post i feel it may help me as i go to my Dr next month. I was diagnosed with Parkinson's in 2007. I was put on Carb 25 /Lev 100 at that time,,, It worked great for a few months,, the nightmares were sorta ruff,, but at least i could function. After a couple of times when i froze up at work,,, i was given azilect to go with the Car/Lev. The night mares increased. But i was going wide open,,, that was just the way i have been my entire life.

My life has been spent in the Oil Field,,, The Oil Field was my life,, my mistress,, my home,, When Parkinson's came to visit,, I had no concept of Parkinson's.

In 2009 i was inspecting Drilling Rigs in 4 states,, I come home (Where my wife,, at that time ,, and cloths,, and toys were kept) I would unload dirty cloths from my truck,, insert clean cloths,, then i was gone again,,,, only to return when necessary,,, I never thought much about the meds effecting me in such a way. I have been on the move my entire life,, if i wasn't working ,, i was on my motorcycle,, just going,,, I was one with the universe on my motorcycle.

I retired in 2009,, life changed,, i did all the crazy stuff,, still do,, When i ask the Dr about the nightmares , it just didn't seem to matter much to them,, to me it was a "Big deal"!!

I am now going to the VA in Houston where they have a Parkinson's (PADRECC) Center,, my Dr is great,, I got off azilect over a year ago,, the nightmares lessened. About 4 months ago i started taking Entacapone 200 mg tab,, the nightmares returned,, but i can function again,, I feel alive again,, Without the Entacapone i can't do anything,, the slightest task is impossible.

Today i read what i can about the new meds. that are being used,, My latest interest has been Medical Marijuana,,, I am at the point i will try anything to just be able to function. Most of my meds have made the disease worse,, Dyskinesa,, no sleep,, nightmares,, anxiety,,

What is the latest,, from your stand point,, on the effects of marijuana as related to Parkinson's Disease?

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hello LD

I only have knowledge about the street brand that one may purchase at the pool hall. Medical types are much different and more effective but not as strong as street. The experiences of users that I have been told about are not consistent and it may be that it's effectiveness varies a lot from person to person. I will discuss with my Nerou in 7 days to see if he recommends it.

I traveled North America as a process equipment salesman, . I never told my wife where I was going on a trip because she would worry and when she did not know where I was or how I was getting there she stopped fretting. Getting my hands on the first cell phone allowed her to call me and that made her happy. I retired 6 years ago at 61 and took myself off the road and stopped driving and sold my beautiful 91 Jeep Cherokee when the Ropinirol started making me fall asleep standing up. Later the Amatedene countered the dozing but just when I thought I could get my freedom back and get out of the shotgun seat, I lost the feelings from the soles of my feet and now I can' feel the dam pedals.

Now I have to worry about doing compulsive stupid things. My daughter is telling me what to do and my wife treats me like a cripple ( she did not much like my taking up her time and space around the house when I retired. She enjoyed too many years alone all week) This decease is indignant and degrading , I want my life and my Jeep back.

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Hi folks,

I found this forum by searching this specific topic. I'm fortunate to not have PD, but have been treated for severe RLS for over a decade. Up until a year ago, I was on Requip, which started at a lose dose and then gradually increased until I was sent to a neurologist because it was thought I would need a dose that is typically only given to patients with PD. long story short, this new doctor put me on 9mg per day (from a previous 3-4mg per day) and within a month I was blowing every penny I had on gambling. Six months later I had blown through almost $100,000, was massively in debt, my wife left me, I lost my job, my family disowned me, but I couldn't stop. I had no idea it was the Requip. My doctor knew I had a history of alcoholism and thankful I stayed sober, but the addiction to gambling made me steal anything and everything, be arrested, and nearly become homeless. 18 months after that dose increase, my psychiatrist found some articles about the Requip link to impulse control disorders. He recommended I go to my PCP (not my neurologist) and have a different med prescribed. Less than 2 days after I was off Requip, the compulsion was completely gone and it was like a fog has lifted. Unfortunately the damage was more than done. Still picking up the pieces. Bless you all and be careful!

Jerry

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Does anybody have some complaint like mine.im on Max dose of pramipexole 4.5mg ER. Since it was out of stock today I took the usual 1.5mg dose at 4am like I used to take before starting the ER form. I found as the day progressed my need for c/l was less the off time which came every 3hrs started every 5hrs. I took sublingual b12 which made me even more comfortable. But at 230 -3 pm when I next took the pramipex1.5 I was struck by shooting pains down the affected limb and became very agitated and tremors came in both hands. Took 1/2 cl but for the pain I took traamadol. Seems to be easing now.

Is there any side effect of pramipex involving paraesthesias over the affected leg

Vn

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I know this thread is from a few years ago but I'm desperate to find "my people"! My husband diagnosed with PD 11 yrs ago at 45yo. Had increased spending and eating on Requip, but developed sexual compulsions immediately after DBS surgery in 2014. Been off Requip for a long time but compulsions still a daily struggle and ramp up whenever his Rytary (ER carbidopa/levodopa) is increased. We have internet software, restricted access to funds, constant therapy, a new drug to combat compulsions specifically in PD (Nuplazid) but still the strong compulsions persist. I know this is the medication/disease not his character, and I know that to end our marriage is not an option (he'd go off the rails, would put it all on our kids' shoulders, etc), but how do you navigate and survive these compulsions?? Last spring I developed PTSD and anxiety, then this fall discovered an ulcer and balding patches 😜 I love him and am committed to him because I believe in him, but dang, I'm at a loss as to how to navigate our family through this, especially when, swamped with dopamine, his mind believes I'm his enemy.

I'd love to connect with anyone else living this nightmare who would be interested in staying connect to offer ideas and perspective, or simply be a sympathetic and understanding friend on this crappy PD road! Thanks!

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We all need a place to vent. I’ve only been dealing with PD for a short time. That you are still standing upright amazes me.

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