Has anyone had problems with obsessive be... - Cure Parkinson's

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Has anyone had problems with obsessive behaviors b/c of Parkinson's meds? Will counseling help at all?

sandiegogirl profile image
77 Replies

My husband has a serious problem with porn and I can't live with it any more. Is there any hope with counseling or is it impossible to stop the behavior without eliminating the medication all together. I plan to go to counseling, but really need to know if there is hope.

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sandiegogirl
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eh110575 profile image
eh110575

Yes there is always hope! May be your husband will overcome it. I hope he can and if his wife can support him a lot he has a chance. My wife gave up on me several years ago. I still try to hide it.. My addiction became a habit with just masturbation starting out age 10, yes before purberty. This is what happens with young kides spending the night with older kids. I am weak and think tkhe habit bothers no one but me but that is where I am wrong.If your truly love this man, then help and dont give up. Its too for me.I have done all i can do and cannot overcome it!

sandiegogirl profile image
sandiegogirl in reply to eh110575

Thank you for sharing this with me. I have been with him for 26 years. He has had an affair and is now trolling the web for women. I have found numerous pictures of him in various states of "excitement" and have found instructional videos on how to pick up women. I have also found a bunch of adult toys some for single use, some with partners. Not sure if he is picking up women at this point. He works on the road, but he has PD so not sure what is going on. Right now I love him, but don't trust him and can't see living like this for the rest of my life. I need to do more research on the meds. For instance, if he gets off the requip will he totally loose his desire for porn and extra marital affairs?

Amazin profile image
Amazin

This can can be attributed to medicine. Make an appointment with his neurologist and be open and honest. There different ''cocktails'' of drugs as I like to call them. Perhaps they can re-adjust him .My advice, see the neurologist before the counselor - if you and he can openly discuss the issue

sandiegogirl profile image
sandiegogirl in reply to Amazin

Thank you. I will speak to the doctor. We have been told that he needs these meds in order to keep working. Once he stops working, the doctor will adjust his cocktail. We have two kids in college and need to keep working until he just can't do it anymore. I'm not convinced that once he gets off the Requip that his urge to cheat will stop.

MadgeB profile image
MadgeB

Read about this problem on the Parkinson's UK website, or send for a leaflet. My daughter had to be weaned off the offending drugs slowly and her obsession with gambling stopped. Counselling is not the answer. Might help you though.

sandiegogirl profile image
sandiegogirl in reply to MadgeB

I definitely need the counseling. I know some of it is the drugs. My question is once he gets off the Requip, will his urges stop completely. He had an affair before he was diagnosed and now I have found stuff on his laptop that leads me to believe he is trying to hook up while he is on his business trips. I just don't know if I have it in me to deal with this for another 20 years.

lmbanni profile image
lmbanni in reply to sandiegogirl

You said he had an affair before the diagnosis. Well that is the answer you are looking for. I think you know it also but don't want to admit it. Once a person cheats they will cheat again is my opinion. He now is on a medication that is causing him to look at porn and you think he is acting, or going to act on the obsession to have sex. Requipt is a good drug to help PD patients but has a terrible side effect!! I agree with the others to get him off the Requpt and talk openly to him and his doctor. I believe he will stop some behaviors once he is off of Requipt, but I think he will cheat again. I am sorry for all your pain.

soup profile image
soup

Your husband may well benefit from counselling but probably only once he has stopped taking the medication or reduced the dose sufficiently. Just think about it as any other addition. Would you counsel an alcoholic and expect them to give up drinking when alcohol is still freely available? The medication is causing the behaviour just as alcohol causes liver damage.

Drug adjustment first, then counselling.

I cannot say this more strongly - Get help from your neurologist. .

cabbagecottage profile image
cabbagecottage

It's compulsive behaviour as well .. Whenever I place something in front of my husband I tell him to wait but his hand comes out immediately. Even when I ask him to wait beforehand in case it's too warm for example . Similarly once he has something in his mind he cannot rest until it's sorted . on

reflection I believe he had it before his diagnosis but made worse after taking the meds . Sinemet /Roprinirole. x

sandiegogirl profile image
sandiegogirl in reply to cabbagecottage

Yes, he had a propensity to this addiction before he was diagnosed. I know the meds are a big part, but will he stop completely once he is off Requip? I will be in counseling to help me. I can't help him. I must decide if I will live this this type of relationship for the rest of my life.

redread profile image
redread in reply to sandiegogirl

When you refer to "Requip," is this the same as Mirapex?

diamondlights profile image
diamondlights in reply to cabbagecottage

Hi my father has PD for the last 10 years, and I have noticed that he is also obsessed with gardening chores or whatever it may be he will not wait. My mother and myself find it hard to understand why he is like this. My father also takes the the meds you listed , so are they to blame. I am new to this site, and as my father is gradually getting worse over the years I know very little about this terrible illness. wishing you well x

sandiegogirl profile image
sandiegogirl in reply to diamondlights

Yes diamondlights, the meds can very well be to blame for your dad's obsessive behavior. It is typically the Requip or Myrapex that causes it. As the medication dosage increases, so do the behaviors. I encourage a conversation with your dad's neurologist. I commend you for reaching out and finding useful websites. I'm sure there are a lot of people on the website who can provide helpful websites. I have found any of the Parkinson's Associations to be helpful as well as the Fox Foundation website. Thanks for your input.

diamondlights profile image
diamondlights in reply to sandiegogirl

Many thanks, I will look up the Fox Foundation, take care. diamondlights

Pete-1 profile image
Pete-1

I wonder if your husband sees this as a problem or is this problem really your problem? Does he spend a lot of money on porn either online or magazines and is therefore being exploited. Or is this s problem of your husband spending far too much time on porn to the exclusion of other more meaningful and useful occupations.

Also what medication is he taking? My understanding is that t is only Dopamine agonists that cause problems with obsessive behaviour and then usually wit high doses. If he is only taking Levodopa in what ever form then the obsessive behaviour is likely to be due to something else.

sandiegogirl profile image
sandiegogirl in reply to Pete-1

Very good food for thought. It definitely is my problem. I have always equated his urge for porn as a type of cheating. I don't think he is spending a lot of money on porn, other than the amount he has spent on sex toys. I have found some X =rated pictures of him on line and also found instructional videos and websites on how to pick up women. Not sure if he has followed through, but he is out there trying, found condoms too. My question is if he stops the Requip whether he will stop the addiction to porn. Not sure if I can live with someone I love, but don't trust. I'm going to counseling to get this all sorted.

Pete-1 profile image
Pete-1 in reply to sandiegogirl

If your husband decides to stop taking Requip he must do so under instructions from his GP. Lots of Parkinson's drugs have to be treated carefully its not just like taking a Paracetomol. Stopping Requip (any Dopamine agonist) must be`done gradually over several weeks. Suddenly stopping may lead to Neuroleptic Malignant Syndrome (NMS). Check google wikipedia for more detail. But bear in mind that although unlikely NMS can be fatal.

I seem to remember recently reading that Levodopa base drugs need to be treated in the same way too.

Pete-1 profile image
Pete-1 in reply to Pete-1

Oh and I meant to add that stopping over several weeks will confuse the matter of whether the porn obsession will go immediately so your question may not be answered in full.

redread profile image
redread in reply to Pete-1

My husband's neurologist just told him on Tuesday that he could stop taking the Sinamet on Friday evening and start the Mirapex on Saturday morning. She said it doesn't require tapering off. After reading your post, now I'm wondering what is correct.

Pete-1 profile image
Pete-1 in reply to redread

If swapping from one Dopamine agonist to another then no need to taper or titrate but you are changing to a Dopamine agonist from a Levodopa replacement. I don't know what difference this makes. Are there any people out there in our community who have changed from Levodopa to Dopamine agonist. Anyway the risk of NMS is quite small and certainly you should take advice from your neurologist rather than me.

Generally people move from Dopamine agonist to some form of Levodopa because Levodopa is a superior drug. Normally people get given both after a while using one or other for quite a while. At least that seems to be how it goes for most who report their drug regime in this forum. I certainly started on Pramipexole (Mirapex) before being given Madopar in addition.

Please can you keep us posted. Thanks

redread profile image
redread in reply to Pete-1

Thanks, Pete. Like everyone else, we are just trying to get the best infoi from others who have experienced so much that we are going through. My husband has a great neurologist but I wonder just how many people they talk to about symptoms or if they do any long term studies about any of the side effects. I have both a respect for and mistrust of big pharma and the medical community. Cant't live with them; can't live without them lol. You have shared a lot about different PD issues that seem very much on point. Thanks for your reply!

anneks profile image
anneks in reply to sandiegogirl

It is not YOUR problem. P D and the meds cause a lot of behavior problems. Talk to him. Let him know that you both need to talk to the doctor about his meds and behavior. He needs you as an ally, but you need to find a way to stay happy in order to help him through the PD which will worsen.

PDWife60 profile image
PDWife60 in reply to sandiegogirl

The erosion of trust is the hardest, I think. I can't stand it when he lies to me. I know in my heart of hearts, he loves me. He doesn't want me to leave, nor does he want to leave. However, my husband also is addicted to porn and sex toys. I do not think he has acted on his urges, seen other women in person. From what I can see, he is not engaging them in conversation or posting pictures of himself, but he is good at hiding his on-line activities. Asking him for honest answers feels rather useless because his first response is to lie. I have walked in on him looking at sites -- I mean literally sitting there with porn on the computer, and he will swear he isn't looking at anything. I can not expect an honest answer, and I hate not being able to trust him. We have been together 18 years and always had an excellent relationship, so this really throws me.

It is not just the sexual aspects either. He is pulling away from me. I feel like I play no part in his life. I know this is not altogether true; we thoroughly enjoy working in the yard, going to the gym, doing other activities together. He loves for me to go to the bar with him when he plays guitar, but I really don't want to hang out in the bar. It is not a good environment for me. I don't know if I can say he is obsessed with playing, but it does seem he has become more obsessive with things over the years. (He was diagnosed in 2010.)

Can his medications cause all of these changes? Does the Parkinson's cause this? Is it a combination of meds and the PD? I am trying to understand and figure out what I can do to keep a healthy balance in our lives. He did, at my insistence, reschedule (move up) our appointment with the neurologist, and he is seeing a psychologist who has some knowledge/experience with PD. He always seems to feel better when he gets home, but he is still obsessed with porn and self satisfaction at the expense of our intimacy. I mean, I can be waiting for him, and when I go to find him, he is enjoying himself instead of coming to bed with me.

Like you, I am beside myself with frustration. I don't know what to do. I love him with all my heart and want to stay with him forever, but is this ever going to stop? I wish you and your husband recovery. I hope you can work it out. All my best to you.

jupiterjane profile image
jupiterjane

Please check with the Doctor. Medications, especially Mirapex, can cause compulsive behaviors. I got myself in quite a bit of trouble shopping while on Mirapex. Check the side effect of any medications he 's on.

Take Care

sandiegogirl profile image
sandiegogirl in reply to jupiterjane

Did you find that once you stop the MIrapex, that your compulsive behavior stopped? I'm not sure how I will feel if he stops completely, the damage has been done. Please let me know how things were for you once you stopped the Mirapex.

jupiterjane profile image
jupiterjane in reply to sandiegogirl

Yes, my compulsive behaviors stopped after I got off the Mirapex. I no longer shop like I have money to burn!

Anthonyian profile image
Anthonyian in reply to jupiterjane

Hi Jupiter Jane how long did it take you to be weaned off mirapexi thanks

Anthonyian profile image
Anthonyian in reply to jupiterjane

Hi Jupiter Jane how long did it take you to be weaned off mirapexi thanks

jupiterjane profile image
jupiterjane in reply to Anthonyian

I think it took about a month or so. It depends on how long and what dosage you're on.

Anthonyian profile image
Anthonyian in reply to jupiterjane

Hi Jupiter Jane how long did it take you to be weaned off mirapexi thanks

Healthyangel profile image
Healthyangel in reply to sandiegogirl

Yes, once my husband stopped taking Mirapax, it gradually stopped. Read my post "Mirapax side effects". Or here it is

My husband was diagnosed at the age of 35 with early onset. He is a very intelligent & succesful man, held high moral standards, a role model to many people. He is also a trophy husband, everything you would want from a man. He loves me dearly.

Then came the diagnosis. Doctor put him on Mirapax. Never warned us of any side effects.

He was sneaking some porn occasionally online. I gave him a warning. Then I found him chatting online with women, then having sex on the phone paying up to $300 per call. Then he was soliciting sex whenever he went for business travels. Then I found out that he did have sex with other women! I just don't know how many. (I did have him checked for STDs )

Went to the attorney, looked into a divorce. Didn't understand my loving husband suddenly turned into a devil overnight.

But I did remember every time we go to the doctor, he would check with me if my husband had shown any compulsive behavior. I always said no coz I didn't know then he was doing all these things behind my back. Thankfully a part of me put two & two together so i decided to give the nurse a call.

Lo & behold, she told me it was definitely Mirapax & discouraged me from proceeding with the divorce.

So we went to the doctor immediately, discussed with him what happened. He immediately told my husband to quit taking it.

The pain as a spouse is beyond words. It's like putting a knife through your heart.

Our marriage was almost over. I was severely hurt.

My husband tried his very best to restore our marriage. He told me that if I had proceeded with the divorce,he would have committed suicide. Not only would a drug cause a divorce but perhaps a death!

I forgave him. It wasn't easy. I cried for almost a year, I couldn't talk to anyone about my pains. But slowly & surely, after a couple of years now, I can say we're a happy couple today. I cannot imagine what a drug can do to a person. Some gambled their life savings away. Some end in divorce.

A part of me wished It should never be prescribed but it helps other people without the side effects. So I say, watch out! Watch for behavior changes. Don't wait until it's too late.

I wished I had found this earlier so I could talk to some people. Now, I would like to help some people with my experience.

PDWife60 profile image
PDWife60 in reply to Healthyangel

Thank you for being so honest and forthcoming. Yes, the slow, steady discovery of hurtful behaviors is devastating and can cause long-term irreparable damage. My husband, like yours, is an honorable, upstanding man, who also happens to be a "hunk". Over the past two months, I have discovered his obsessive activities on porn sites and his sneaking time with porn movies in our home. To the best of my knowledge, that is as far as it has gone. He assures me that is the extent of it, but I fear trusting what he tells me. I vividly remember his doctor warning us that the Neutro patch he uses can cause addictions, including sexual. So, at my insistence, he talked to his neurologist, who changed dosage. He is seeing a therapist who specializes in Parkinson's and addictions. I also am seeing a therapist to help me through my hurt, anger, resentment, and mistrust. I will do everything in my power to help us through this issue. I love him with all my heart. Your post gives me hope and strength. Thank you.

PDWife60 profile image
PDWife60 in reply to PDWife60

I have to add that it is not the porn, per se, that hurts and angers me so much. It is his sneakiness, obsessiveness, deceit, and lying. He says he denies what he's doing because he is ashamed. I believe that; it is all so out of character for him.

honeycombe3 profile image
honeycombe3

My OCD is binge eating which may seem minor compared with some others until I say I have had 2 heart attacks in the last 3 yrs. Dopamine agonists are the culprit - in my case Ropinirole (Requip). I have taken this for over 8 yrs - max dose 16mg daily. I slowly went down to 4mg:not enough to control shakes, up to 8mg sort of OK, 10mg fine, neuro put me up to 12mg: back on the binge. A combination of poor mobility due to a fall, foot surgery & a heart attack since last October resulted in 2.5 stone weight gain.

I differ from others in that I have found hypnotherapy a great help in controlling my behaviour: the emphasis being on therapy which is a form of counselling. I have been seeing my therapist as needed for around 5 yrs & my PD nurse reckons I'm the only person she knows who can lose weight while on agonists & keep it off!

Addiction/compulsion/obsession are about controlling behaviour. Used alongside reduction of offending meds hypnotherapy has proved a powerful tool in putting me in control.

sandiegogirl profile image
sandiegogirl in reply to honeycombe3

Thank you for the advice. I think hypnotherapy would be great to try. I just can't continue to live with his addiction. I know he is affected by the Requip and he do without it. It is hard to separate his addiction and look at it as a symptom of PD. Porn can destroy a marriage. I don't believe the men on this website quite get it. I will go to therapy and decide what to do, but I will work very hard to work things out.

PatV profile image
PatV

Change the medicine if he is on requip or any dopamine agonist. If this does not work, and I will bet anything that it will, then counseling will not hurt. I lost 40 lbs. when I went off it and switched to sinimet. 7 years honeymoon

mommajo profile image
mommajo

My husband always had at least some problems with porn, but never he never saw it as any business of the rest of us..he felt it it didn't affect us. Since Ropinerol, his addiction has accelerated. Then just prior to Christmas last year, his OCD exploded into a major online shopping debacle. The neuro reduced his 4mg 3x to 2mg 2x, and both have eased off a bit. Can't say they've disappeared, but at least I can sleep at night. That being said, if he has a sleepless night, watch out. Computer surfing in the wee hours has produced some budget busting, scary purchases (did you know that some online realtime auctions will charge exorbitant % to let you out of a bid, even when the illness is explained?). We now have a medication that seems to be allowing him to sleep at night (5 nights straight so far), so maybe that problem won't be so bad. His psychologist isn't much help...the mild dementia kinda precludes any really productive therapy. I'll overlook the porn, if he just stops spending us into debt!

sandiegogirl profile image
sandiegogirl in reply to mommajo

So you know how this all feels. The porn was one thing as well as the "self satisfaction". Now I have found X-rated pictures of him on the computer and tons of videos and pictures. On top of all of this I have found sex toys, some for single use and some for couples and I'm not the one he is using them with. I have also found videos and instructions on how to pick up women as well as condoms. My husband had an affair before he was diagnosed, not sure what is going on now. He works as a consultant and lives in hotels. As far as his spending, I'm concerned that he is charging up credit cards. I need to be able to have access to his credit card spending. Not sure what is going on there and he isn't transparent. We are in debt and some of it is that he is terrible about doing his expense accounts. Been paying Peter, to pay Paul. I don't know if I can continue like this. Feel very excluded and lonely in this marriage. BTW, what does your H take for sleep?

mommajo profile image
mommajo in reply to sandiegogirl

The med that is allowing him to sleep is not for sleep per se...it's a mild anti-psychotic taken only before bed to combat his paranoia that he will fall asleep and not wake up.

I threw my heart and soul into an email to the online auction that wanted us to pay $1500 to get out of an item he bid on...and they gave me a one time exemption...they also blocked his further bidding, at my request. PTL

My hubby is housebound except when I take him somewhere, so at least I don't have to worry about actual sexual escapades. The porn stuff is taxing, because he can no longer understand that "all women" don't get excited by porn style sex. I'm 64 and not about to try new kinky things with a man who is impotent from a combination of the disease and treatment drugs-and I would feel like shit when he couldn't perform anyway. And I guess I'm just worn out...emotionally, mentally , and physically. I will keep you in my prayers, sandiegogirl...it hurts me to think of you dealing with this when your hubby is actually out on the road.

sandiegogirl profile image
sandiegogirl in reply to mommajo

I know exactly how you feel. I am also warn out emotionally, mentally and physically. Thank you for your prayers, you will also be in mine. It is very hard to realize what our future holds. It would be one thing if he was the greatest husband and loved me to pieces prior to the PD, maybe I could give him more grace with the porn. But because of his past, it is hard to take a hard look at what the future holds. I have nothing to cling on to as far as great memories of a marriage ruined by disease. I just opened a credit card statement this morning and found that he has maxed one of the credit cards out to a tune of $25k I am frightened for our future! We have two kids in college and already are struggling to pay bills. I am going to email his doctor, don't know what else to do.

lmbanni profile image
lmbanni in reply to sandiegogirl

If you leave him is the state you live in a community state? Is so then you will still have joint responsibility of the debts he has made. You may have to claim bankruptcy to get out of it all. You must be sure you or he has a place to live before you make any changes. Just trying to help you before you make a decision. It will not be easy. Will you be able to live with the fact you left him while he was sick? It will be hard. Do the children know about the bills he is making? You need to be open with them as well. They will be angry with you if you do not explain ALL of it. Even the porn and the fear of him cheating on you. I will be praying for you also.

NanCyclist profile image
NanCyclist

While I was on Mirapex I couldn't stop doing needlework, even in the middle of the night. Harmless, but obsessive. We switched to Requip XL and the problem disappeared. At least we have a lot of pretty artwork.

Coblrman profile image
Coblrman

Mirapex has compulsions and has been blamed for a lot of failed marriages. Without your firm love and support though it will only worsen. You need to help him with finding if it is a med problem and make certain he knows how hurt you are (anger will only make him defensive but if he sees how much you hurt from it there is still hope for him overcoming it). He also needs to realize that it is a spiritual problem.

sandiegogirl profile image
sandiegogirl in reply to Coblrman

Yes, this has been a spiritual problem even before he was diagnosed. Porn was allowed in his home growing up so it has been a long time. I have found it hard to love him the way I need to love him and be the wife that God wants me to be. I have turned my head for over 26 years and it has been a hurtful marriage. I know that the Requip has made these urges stronger, but I'm not sure I have the strenght to endure this. Will I be resentful 15 years from now being a caregiver to someone I feel betrayed me? You see he had an affair 10 years ago and I thought I forgave him. It keeps seeping back. I know forgiveness is an ongoing process, but the addition of the continued porn is difficult. On top of this, the porn has increased where I have found a lot of X-rated pictures of him on his computer. I also have found instructional videos and manuals on how to pick up women. I have found sex toys for one person and couples and also condoms in various flavors. My H works on the road so you can imagine that where my thoughts are going on this. At this point I am seeking counseling on what to do with all of this knowledge and where to go from here. I ask my self if the meds are causing this, and he gets off the meds and stops the behavior, how will I feel? I'm really not sure!

Coblrman profile image
Coblrman in reply to sandiegogirl

He needs to understand that this is wrong because it hurts you and God both immensely. You must let him know (not through anger) how much it hurts you and how you feel. I believe it will motivate him to see how much harm he is causing you. Do not use accusatory words but simply tell him "I feel ...." for example "I feel unloved, and worth nothing..." Avoid using "You" when telling him your feelings.

GaryTorch profile image
GaryTorch

I agree this is largely a medication problem—these agonists cause undo agony, and should be used sparingly, under careful supervision, if at all. i weaned myself way down on mirapex and my OCDs diminished greatly. I recommend your husband do this as well. Therapy won't do him a bit of good as long as he's taking an agonist, which feeds the OCD like fuel does a fire. I believe the problem is more widespread and pernicious the doctors say it is. insist he get off the agonist (though he might resist--OCDs feed themselves). Good luck!

Jose profile image
Jose

I have training in therapy, but will not respond from that perspective. In my opinion porn is not necessarily a problem. It may be filling a need not otherwise met. There is porn and then there is PORN. For example "The Image" , a movie, may be considered porn by some, others could rate it NC 17. If one is preoccupied with porn it may be another matter and professional care essential. Your perception is what counts and your questions need resolved. Hope is elusive. With competent professional guidance I think there's a good chance you'll find it.

sandiegogirl profile image
sandiegogirl in reply to Jose

Thank you for your reply. I see what you are saying regarding how we perceive porn. To one person in the marriage it can be no big deal, but the to the other it is. Therefore, it is a choice if one person continues in a behavior when they know it hurts the other. I will seek therapy to help sort out how I really feel about this. He clearly is seeking out a need b/c now he has pictures of himself out there and I have found condoms and sex toys. In my mind he too has made a choice as well. I love him, but am not sure I can continue to live in a marriage where I can not trust my spouse.

scottyt profile image
scottyt

Stick with the Sinemet and can the rest of the meds, My brother went thru all these negative symptoms and it ended in disaster.

sandiegogirl profile image
sandiegogirl in reply to scottyt

Yes, that seems to be the consensus. I wonder if by discontinuing the Requip whether his porn habit will go away. He is really getting in to some funky stuff and doesn't know I know. I'm a bit grossed out by it all. I will get counseling and figure out how to even confront him, but things aren't good.c

Pete-1 profile image
Pete-1 in reply to sandiegogirl

I forgot to mention that stopping Dopamine Agonists (Mirapex in my case) can be very difficult. Someone in somechat room or other likened the withdrawal as being as difficult as stopping cocaine.

I stopped Mirapex once (slowly) just for a few days. The withdrawal was very unpleasant in a way that I can never satisfactorily describe. I found not taking Mirapex exposed a problem with RLS (Restless Legs Syndrome). This makes sleep impossible to the extent that I can easily see how, without help you would become suicidal. Other withdrawal symptoms include feeling very restless, unable to just sit and relax. Felt all the time like I wanted to be on the go, sitting and reading a newspaper would be possible for a couple of sentences. There's more but I can't remember anything offhand.

scottyt profile image
scottyt in reply to sandiegogirl

I repeat myself but here I go, Stick with Sinemet and dump the rest of the medications, they are not a cure they just mask symptoms, if he needs a hobby try medical marijuana no side effects and it works and good-bye compulsive behaviors. Repeat after me...

sandiegogirl profile image
sandiegogirl in reply to scottyt

yes, I have heard the same about med. mj. Wish we still lived in CA.

Hikoi profile image
Hikoi

Sandiegogirl have you searched on line about these drugs and this behaviour. Many more studies are coming out showing that this is a compulsion which will not go away by wishing or counselling. The drugs are causing it and he needs to come off them. A few people can stay on low doses but many others cannot. Does his neuro know this is happening? I think they need to know. I have had friends loose everything, their savings, their homes and their relationships. As soon as they stop the drug they say its like a switch turned off, the compulsion stops. It is very serious. Going to a counsellor for yourself and for support throughout all this difficult time is really good but it needs to be someone who understands about dopamine agonists and their effects. Its not easy at all for you but now you have started.

parkinsons.org.uk/content/p...

mommajo profile image
mommajo

I cut my husband's requip from 4mg 3x to 2mg 3x with no titration, and the compulsions lessened with no withdrawal symptoms. I don't know if cutting it further would make it still better....

Hikoi profile image
Hikoi in reply to mommajo

Yes reducing meds ALWAYS helps but be careful he should do it slowly and involve his doctor. Pete has mentioned the rare neuroleptic malignant syndrome and there is also Dopamine Agonist Withdrawal Syndrome (DAWS).

Hikoi profile image
Hikoi

To emphasize how serious this is the UK Parkinsons org has produced resources including video. Here are some extracts from their information sheet

What is impulsive and compulsive behaviour?

Impulsive behaviour is when a person can’t resist the temptation to carry out certain activities. These are often activities that give an immediate reward or pleasure, such as gambling, eating or shopping, or an increase in sexual thoughts and feelings. Often, people may demonstrate more than one of these behaviours.

How does this relate to Parkinson’s?

Impulsive and compulsive behaviour is related to dopamine levels in the brain. Dopamine is the chemical messenger in the brain that is primarily affected in Parkinson’s. As well as helping to control movement, balance and walking, dopamine also plays a big role in the part of the brain that controls reward and motivation. This is important, as people affected by impulsive and compulsive behaviour are driven or motivated to do something that gives them an instant reward.

Some Parkinson’s drugs – particularly dopamine agonists and, in some cases, levodopa –– have been linked to these types of behaviour, although it is not exactly clear how the medications cause the changes in behaviour.

Research has shown that around 17% of people with Parkinson’s who take dopamine agonists experience impulsive and compulsive behaviour.

Types of Behaviour include

Hypersexuality

This is a focus on sexual feelings and thoughts. Sexual impulses become more intense and might be felt at inappropriate times and towards people other than a partner. This can be really distressing for the person and those around them. It may also result in an increase in using the internet to access explicit websites. This may happen in secret, perhaps in the middle of the night, when no one else would know this is happening.

Some people may experience changes in sexual orientation or start wearing clothes usually worn by people of the opposite sex.

With hypersexuality, there is also a risk that someone will behave in a way that is socially unacceptable, or may even break the law.

What to do

Parkinson’s medications do a lot of good, when they are monitored. If you’re aware that you, or a friend or relative, may be experiencing impulsive and compulsive behaviour, use the information available. Don’t live in denial. Speak with a healthcare professional.

sandiegogirl profile image
sandiegogirl in reply to Hikoi

I will be contacting my H's doctor tonight. Thank you Hikoi for the great information. This needs to slow down or I'm not sure I can stay. I don't think I have it in me.

Angryman profile image
Angryman

Hi Sandiegogirl,, I have taken a dopamine agonist drug called Bromocriptine .I started taking this drug at age 20 ,, for micro-scopic pertuatary tumors. I have suffered compulsive behaviors (hyper sexuality) for 17 years. Avoid Bromocriptine,, it has ruined my life.I started taking this horrible drug in 1990. I don't have PD , but do get muscle twitches , RLS, . I'm not sure if these muscle twitches are another side effect from this PD drug . I stopped taking Bromocriptine in 2008 after watching a tv show about the side effects. Be careful with any type of PD drug , I wish you and your husband the best of luck ,, Don't trust just 1 doctor ,, get several opinions ,,

sandiegogirl profile image
sandiegogirl in reply to Angryman

Thanks for the insight. I believe where all of this is going, is that my H will have to stop working. His doctor said she could eliminate most of his meds if he stops working and his tremors and side effects would diminish significantly. It is a hard decision with two kids in college, a mortgage and a wife that makes half of what H makes.

Hikoi profile image
Hikoi in reply to sandiegogirl

Sandiegogirl

What an awful dilema. But your H only needs to stop the dopamine agonist causing this, i know others who have adjusted their other meds to have good cover after this. Its not about coming off his meds, only off one drug. Tremor is often said to be the hardest symptom to control. I dont understand what your doctor says about being able to eliminate most of his meds if he stops work, maybe reduce medication. It is a progessive condition in everyone unfortunately and over time gets more complex to treat.

Having said that it is very hard to hold down a full time job with PD. I am always impressed by those who do it.

isis6361 profile image
isis6361

He needs his medications reviewed . This happens ion high dose medications either agonists or ldopa such as sinemet or Madopar. It won't stop unless the medications are either reduced or stopped. There are many Parkinson's medications that he can be on that won't result in this

Kathleen profile image
Kathleen

If your husband is on Mirapex,this is a side effect. Check with your Dr. you can have gambling obsession shhopping , sex. myself I had gambling obsession and never in my life gambled before. Also check with his Pharmacy. It is like a demon and I went to a phycologist and it was not me ,as soon as I got off the Mirapex I was back to my old self but to the tune of -$62,000. Please get him help

sandiegogirl profile image
sandiegogirl in reply to Kathleen

So when you got off the Mirapex, your compulsions went completely away? My H is on Requip and had a porn problem prior to his diagnosis. However, if the reduction or removal of the medication will eliminate most of compulsion, that would be great. He has racked up about $25k on porn from what I can see. I think he is hiding more from me. I have a lot of thinking to do about all of this and whether our marriage is strong enough to endure.

Bunky profile image
Bunky

So sorry to hear you and your husband are going through this. In my opinion the best way for him to get better is to get off the meds completely. My husband had a devastating gambling addiction caused by an agonist. Getting off the med and counseling worked.

margie profile image
margie

This has became big news a few years ago. I know that people have complained about compulsive behaviors while taking mirapex. This includes, porn, sex addition, gambling and etc. Important to see your neurologists to discuss this. Some medicines apparently have created problems. Please see the neurologist ASAP.

AlabamaDoc profile image
AlabamaDoc

I had similar effects regarding porn that started when I was taking requip (a dopamine agonist). I eventually got off the agonist and was only on sinemet. The behaviors improved a lot but did not entirely go away. There were several factors that made seem to make my behaviors worse. At first, I used masturbation to porn as a means of relaxation to try to get to sleep better. I would be able to go to sleep but when I awoke I was filled with guilt and shame for what I did. Another factor that worsened my problem was when my wife and I started sleeping in separate bedrooms. I would frequently wake her up because of dystonia and spasms at night; she would wake me up by wanting the TV on all night. So we both started to sleep better when we slept in different rooms, but that just made it easier to access porn at night. I rarely had the problem during the day because there were other things to focus on; but at night I needed to take extra sinemet to calm my spasms enough to go to sleep. While under the influence of the dopamine effects it was as if my "right vs wrong filter" was not working. My decisions seemed justified and appropriate at night under the influence of the medicine, but the next morning I was appalled and ashamed of the things I did the night before.

I was in a catch-22. I needed the medicine to function even for a little bit; yet the same medicine had a "Dr. Jekell and Mr. Hyde" effect that was destroying my marriage. This behavior was destroying my marriage and my wife was losing trust in me because of my behaviors. During the day, I too would be regretful of my behavior but at night it all seemed to be perfectly justified. Counseling was helpful both for me and for my wife. It did seem to help her be more understanding of my behaviors when she realized that much of the behaviors were directly the result of the dopaminergic drugs.

This behavior was one of the main reasons I started to look at DBS as a treatment option. After I had bilateral DBS, I was able to significantly reduce my dopamine medicines and the behaviors immediately stopped. I didn't even have the desire to see porn again. To me that helped me to realize just how much the medicine had on my behavior. Also, DBS gave me back the ability to sleep such that I look forward to going to sleep at night; whereas before, I dreaded the night because of the insomnia and sleep depravation.

Even before the DBS, once my wife saw me as one who was also being victimized by the drugs, she could see Parkinson's as the enemy; not me. This is my story and DBS may not have the same effect of everyone else, but I wanted to share my story with you to offer hope that there is hope.

sandiegogirl profile image
sandiegogirl in reply to AlabamaDoc

Thank you for being so open and forthcoming. I do see my husband as the enemy at this point. His behavior disgusts me but through your response, I have a bit more understanding. I'm in therapy, but there doesn't seem to be therapists that really understand what is going on. I have chosen to not do anything or make and decisions until the first of the year, but this whole situation is eating me up. The sad thing is, my husband has no interest in getting help or even reaching out to groups like this one. I suppose there is hope. I don't know if I'm strong enough to see it through. Our marriage has never been the strongest and the PD with these behaviors has made me hardened. The best thing for my husband would be to quit working so that he can explore DBS. I believe he is sacrificing his life to continue to work and help support the family. We have 2 kids in college. I work, but make 1/2 of what he makes. Communication is the key and he has shut down. I will continue to reach out to folks like you who can give us hope. Thank you

AlabamaDoc profile image
AlabamaDoc in reply to sandiegogirl

Having to quit my work was probably the hardest thing that resulted from PD. I enjoyed my work but I didn't realize how stressful it was to try to maintain my level of functioning. I worked about 6 yrs after my diagnosis, but my dystonia and spasms got so bad and so often that I spent most of my days at work lying on the floor of my office. I knew I had to quit work but I didn't look forward to days with nothing to do. So I can empathize with your husband's need to work as much as he can. I am sure he feels the pressure of supporting the family and he is choosing to put the family ahead of his personal needs because he will probably show some improvement just by reducing the stress in his life.

Have you discussed this behavior problem with your neurologist or movement disorder specialist. I know it is difficult to open up and talk about this, but there may be some medication changes that will help those behaviors. For example, switching from dopamine agonists like requip to sinemet helped me (although it did not eliminate the porn addition totally). There is new long-acting sinemet medicine that is close to being available (if not already).

Again I would recommend counseling for you even if your husband doesn't agree to it. Before PD, we did have a strong marriage but we came close to ending the marriage because of the PD, especially the behavior changes. I did some research myself about the relationship between dopamine and obsessive behavioral changes. In fact, I informed the psychiatrist that I had been seeing for anxiety and depression since my diagnosis of PD. He wasn't even aware of the relationship. But then he researched the subject himself and came to the same conclusion that the behaviors were primarily the result of the medicines and not because I was a creep or a pervert. These meds can cause various behavior changes like gambling, excessive shopping, obsessive fixations on just about anything, as well as a hypersexuality.

I would have you discuss the DBS option again with your husband. The results that I have achieved after the DBS have been remarkable. So I think there may be a very real possibility that your husband may be able to continue to work even after the DBS. DBS only works on the symptoms on the opposite half of the body. If he has bilateral symptoms, he will probably need bilateral DBS. These issues will need to be discussed with your doctor of course, but I think DBS could offer very good symptoms control and the ability to reduce those medicines that are causing his behaviors.

You both have given a lot to your marriage and I would encourage you to view PD as the enemy instead of your husband. I can say that in my experience, I felt that the medicines altered my sense of morality so much that I really could not see that what I was doing was wrong. I even thought it was my wife's fault for being frigid and not wanting anything to have a sexual relationship with me. Only after, I was able to significantly reduce the medicines was I able to see how it was my behavior, not hers, that was the root of the problem.

I pray for God's peace and wisdom for you and your husband as you go through these most difficult times. I hope this message has been helpful.

Mast profile image
Mast

I sent you avprivate message with a link

I recently found out that my husband has been using a chat room to talk to men. He says that he is talking about me, but I don't know if I can believe this or not. This is so far from his normal personality that I am in shock. I have my own medical problems and he has told me that he does this since we have no sex life. I feel like he blames everything on me. He told me two days ago that he would call the dr about the Mirapex, but so far has not. I don't know how much more I can handle. I love him, but this is something that rips my heart out and I don't think I can live the rest of my life like this.

laglag profile image
laglag

Sandiegogirl,, I just saw your original post last night & today I just happened to be looking thru a magazine I picked up at a PD seminar over the weekend & thought of you & your husband when I read an article about a disorder called Frontotemporal degeneration (FTD). The article says FTD can cause compulsive & disturbing behavior much like what your husband is experiencing. It also says with FTD, the changes in the brain reduce insight & self-awareness to a degree that the patient is not able to recognize his impairments. AND......early on, the symptoms can often be misconstrued as signs of PD. The article says you should go with your husband to the neurologist's office & if they think it could be FTD, they can refer you to a doctor with expertise in this disorder. Maybe it's not the meds, maybe it's not even PD? The magazine is "Today's Caregiver", the May-June 2014 issue. It gave a website: theaftd.org

ancee profile image
ancee

My ocd seems to be cleaning. Just hope I can keep it up!

ancee profile image
ancee

My ocd seems to be cleaning. Just hope I can keep it up!

change meds and try something else we lost $50,000 before i changed.

Thought i was normal during this time he does not know what he is doing is wrong but he will if you get him off the meds.

requip did it to me my wife saw the problem but did not blame me she knew it was the drugs.

all pd drugs can cause this if you are predisposed to it.

go to doctor with him and tell him with your husband in the room.

this is not your husband doing it it is the meds

never give up

it could be a lot worse he could be on the streets with other women or men

take charge before you let the meds make you hate him

he will get ok if he gets help

he may not need counseling when he is off the meds his thought process will go back to normal

been there and done that

i am not a man of fancy words just say what i mean and mean what i say

good luck

R8360V profile image
R8360V

I was hoping someone could help me on this one I carry on with my treatment but I've got this obsessive thought that my husband is cheating on me, he denies everything and tells me I've got a twisted mind plus I'm going crazy, all these comments hurt a lot and I don't know the actual truth, but to be honest he dreams at night which I hear him and sometimes I smell perfume. So am I really going mad or is it happening? He himself has changed a lot with me since my diagnosis but he tells me he's changed because of me, because I accuse him of cheating, if you truly love someone after so many years together he would try and help me if what he says is true not make me worse!! My thoughts.

R8360V profile image
R8360V

By the way I've been married for 32 years already.

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