Hypersexuality and Mirapexin

About Parkinson's and health Impulsive and compulsive behaviour
1

Hi

I am hoping some of you guys are able to help me.My husband has PD diagnosed in 2008.In 2010 he was put on Mirapexin M/R.The dose was gradually increased to help with tremor and mobility.As soon as the dose had gone up a few levels he started to get problems with hypersexuality.This worsened to the extent that he would be attempting to assault me during the night.His mind was also full of sexual thoughts and he felt I was "coming on to him" all the time.

Eventually we discussed it with his GP and he reduced the dose by one level and rereferred him to a neuro.When we saw the neuro he was annoyed the Mirapexin had been reduced and laughed off the hypersexuality saying there was nothing wrong with him wanting sex.very much made it feel it was my problem.We struggled on for a further few months then spoke to a nurse fromParkinsons UK.She told us what a common problem it was and to try another reduction but he would almost certainly need to come off the DA as once this happened it just worsened even on a low dose.

We have recently seen the neuro again and this was again discussed.We were told that if my husband came off the DA his PD would be out of control and his symptons would be much worse even though he is on Madopar.

Has anyone any experience of coming off a DA and how they were affected and how bad the worsenig of the PD was.My husband is in despair and says he can't live like this and the strain on our long and happy marriage has been enormous.

Would be so grateful for any help.

Maisie 52 x

2

Hello maisie52

It is possible for your hubby to come off the DA and you neurologist should know this, my first advise would be find another neuro quickly. I was unhappy with my first neuro and I asked my GP to refer me to another which she did, so I know that it can be done.

Your hubby will need to be weaned off the DA but it is possible and he should start as soon as possible. It's nice that you have become aware of it before it's too much of a problem, I managed to bankrupt us and we still feel the effects many years later. 

Please keep us informed about your hubbies progress.

 

3

Hi Maisie

Your consultant is incompetent.

There is a warning in the leaflet about the side effects of this medication.

All neuros have received extensive  material about the compulsive behaviour that 1in 4 patients on these drugs experience.

Many patients in other countries have received legal settlements for the horrific damage caused by them.

Some of the people on this forum have faced bankruptcy, broken marriages, fractured family relationships, court cases for illegal sexual activities....all as a result of taking these Dopamine Agonists

Stop it now!

Change your neuro.

Contact the Helpline. Phone no at top of page.

Request an urgent appt with your Parkinsons nurse.

Read the posts in the obsessive/ compulsive behaviour thread in the archives on this forum.

My husband behaved appallingly for 3 years. He gave our life savings to a prostitute.

He became addicted to porn.

The rest is too awful to relate.

We changed our neuro and he spent a month in hospital being  completely weaned off Requip and onto Sinemet. It was hard going but he came off the drug totally. Initially his mobility worsened but as the Sinemet increased he began to improve and eventually he was fine.

We had 2 years of psychiatric help. Now he is more mobile than before and mentally almost his old self.

If you do not intervene it will get worse.

Act now and you will be saved the horror so many of us have had to live through. I hope I have not terrified you  but I cannot believe professionals are still allowing this to happen .

Let me know if I can help in any way.

Love

GG

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4

https://www.national.slam.nhs.uk/wp-content/uploads/2010/09/NP-Steve-Gallagher-Research.pdf

This is very detailed but if you read the section "hypersexuality" it may be helpful.

The article also warns about patients affected by these side effects trying to obtain more of he drug.

Deviousness and lies often mask the true extent of activities.

Good Luck!

GG

 

 

5

Hi

I am on requip, a different DA to the one your husband is on but am experiencing similar symptoms of hypersexuality. My neuro has told me categorically that he will not increase the dose and when my PD symptoms worsen, I will have to go onto leva-dopa because of the risks.

I have found a way to manage the excesses by writing sexy novels. Perhaps your husband needs to find a way to channel his urges, it worked for me. It doesn't take the feelings away but it does help.

I also have a blog

http://carolineb2111.simplesite.com/304650844

How have other people managed to contain their compulsive behaviours?

6

6 years on from diagnosis, on Mirapex Azilect and Stalevo, I pretty much do the same thing but via Skype or IM with my fiancee. Thankfully the PD hasn't gotten into my R/H side too much ;)

Often she will sort of encourage me, then later on I find out just how wildly inappropriate the exchange was, but she seems to like it and is happy that in my mind I have no secret "other women"..

I'm a very conservative guy, so a gambling binge would pop up on my radar as a "WTF?" for sure.

Take care

7

Hi

Thank you so much for your honesty and I am so sorry things had to get so bad for you before you got help.I used to be a nurse although I did not do neurology but felt that my husband's symptons were drug side effects.He has already started the process of weaning off and we are now sure we should go with it.

We are able to see our PD nurse for drug changes and our GP is helpful so we will go for that option.

Will let you know how it goes.

8

Hi GG

Thank you so much for your helpful comments and the article is a great help.I am going to print it off and take it to our GP. Our PD nurse is already onside and actually a nurse from the helpline told me that he would almost certainly need to come off the drug as the compulsions don't improve and if they do with a lower dose they eventually come back.

Currently we have been seeing the neuro privately as our NHS appts are constantly cancelled so its easy not to see him and change to another one.

I think what I needed to hear from you guys was that people have stopped these drugs.The neuro gave me a pretty stark choice between controlling my husband's PD or withdrawing the drug and stopping what amounts to sexual assualt.

My husband's Madopar has been increased recently so wecan continue to wean off the Mirapexin. I think the lack of honesty about the drug is depressing and I wonder how many struggle with the side effects but are too embarassed to discuss them.

Will keep you informed.Thank you

9

Hi

Thank you for your help,i have suggested various ideas to him but the greatest difficulty can come when he is asleep or semi-asleep.At least your neuro has realised it is the drug.My husband already takes madopar and mobility is not too much of a problem currently.

I feel rather bitter that we were not warned and that when we were eventually conquered our embarrassment that it was I had a problem.The thing is we have been married 35 years and sex is such an instinctive thing when you have been together that long you know when a partner has changed.I felt as though I waas having sex with a stranger.

Think your sexy novels are a brilliant strategy

Maisie52

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Having been out of circulation for a year or so I'm absolutely gobsmacked to find nothing has changed re hypersexuality & uncontrolled gambling as a result of PD medication.

 

I myself suffered from these problems for many many years, and as a result lost every penny I had and amassed a fortune in debt. I lost career, house, family, friends, etc, etc, etc. I still now live in a rented hovel.

 

Take a look back over my posts for the last 10 years.

 

GG and Glenchass are very familiar with my case, and will be able to point you towards my horrendous press cuttings.

 

Ray.

11

hi Ray

I think a lot has changed but there are still a handful of ignorant pathetic neurologists about.

An example of the change is this leaflet on side effects from the makers of stavelo

• inability to resist the impulse to
perform an action that could be
harmful, which may include:
- strong impulse to gamble
excessively despite serious or
personal family consequences,
- altered or increased sexual
interest and behaviour of
significant concern to you or
to others, for example, an
increased sexual drive,
- uncontrollable excessive
shopping or spending,
- binge eating (eating large
amounts of food in a short
time period) or compulsive
eating (eating more food than
normal and more than is
needed to satisfy your
hunger).
 
what more can they do to warn? its the idiot neuros that are the current problem
12

thats what a good neuro looks like. not difficult to spot the difference.

13

Hello Turnip,

 

I have not been on here for quite some time mainly because as you know my husband has had PD for going on 38 years or more, he had his 70th  birthday in September and reading all the posts just saddens me as I agree some things have changed but not enough bearing in mind it just gets harder to manage the disease as time goes on. As I have always said of course we all want a cure but it is some way off still and all these lovely people are having to go through what we have been through and still going through all these years on, I find that really sad especially as some of the problems could be avoided if doctors would only get together and start understanding the condition better and listen to the Patient.

My husband has now been in the care home for three and a half years and the struggle still goes on to get staff and the GP to understand PD, he stopped my husband's  movical from twice daily to PRN and anybody knows that you must keep the bowels moving otherwise the drugs can't get through to work properly now he has a hernia and operating is going to be very tricky because of his condition he has lost four and a half stones in recent months, and as you may know general anaesthetic's are not good for pwp.

There are not enough nursing homes for people with PwP, they advertise they can manage them but when you go into details they often say no, so where do we go from here? I still havent won the lotto otherwise I would have opened a centre for parkies where they would be sure of good care and a reasonable life.

My husband was so upset and frustrated he tried to kill himself a few months ago, I know this may upset some people but those struggling will understand why he did it.

I still hope that a cure is not too far off but don't hold your breath.

kind regards to everyone and keep up the fight.

vivian

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14

dear Vivian

everyone nows but your GP! how often have we seen that? I am particularly sorry to hear about your husbands weight loss. Its one of god's little jokes that we get fat at the beginning of pd and are desperate to keep weight on at the end. I don't hold with having heroes generally, but you are your husband are two of mine.

fight on

 

humbly yours, turnip

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15

 Dear Turnip,

 

Thank you for your reply, I was a bit worried about posting all that but as I said reading all the posts and from experience from PD friends the number of people with these problems  is greatly under estimated and what saddens me is the lack of support for people living now. General advice and verbal support are good in so far at it goes but practical help is what is needed and better medical help. People I know that have had PD and Cancer tell me how much more support they get from Cancer charities and hospitals.They have many more nurses and of course the hospice's for end of life where is that for PwP, many years ago is was going to happen we are still waiting.

On the positive side of things during my husband's life we have tried to give him the beat support and help to keep doing his hobbies and now I have bought several table top games and quiz books and he is still good on the Wi playing bowls, he always keep using it or you will lose it,

As other on here will know or are going through difficult times it is such a strain on normal life and then after that the separation which is soo hard when you have been together for so long like we have 50 year's now married 48

 

16

perhaps our leading charity has something to add?

17

I think the silence say's it all Turnip!!!

 

Vivien, I am so sorry to hear that your husband is having difficulties. You have been so supportive and you have generously shared the knowledge that you have gained as a carer with others. Life is so hard at times and all that we can hope for is a better day tomorrow.

I hear what you are saying and indeed some of what you are not. This is a horrible condition, there is no happy ending and we must all carry our burden daily, it certainly sounds like your husbands load is getting heavier for him to carry.

Please take care of yourself as your strength is what had driven you to where you are today, blessings to you both for a better tomorrow.

Glenchass

18

Vivian,

Thanks for posting. It is good to hear from you although I am sorry to hear that things have been so difficult for you and your husband. 

It's frustrating to hear of Neuros, GPs and care homes who are not up to date on Parkinson's treatments. I don't know if it would be helpful in your situation but I know that Parkinson's UK has some volunteer educators who visit care homes giving advice on the condition. 

EF

 

 

19

Hi Vivian

I share the feeling of others here and am sorry to hear that you and your husband have been through further trials. 

Sorry it to me so long to get back to you. I wanted to have a chat with our Education delivery manager, Fiona. 

She says: "We have a wide ranging programme of education for staff working in care homes or domiciliary care in fact during the year to December 2013 a total of 18,465 health and social care professionals were trained by either education officers or volunteer educators across the UK – this included 1419 individual care homes.

 We are looking a different ways to grow our reach and are currently looking at increasing the number of volunteer educators and at programmes such as Train the Trainer – where Parkinson’s UK trains qualified home care staff to deliver the education session within their own organisation with online resources to support this."

But I believe you already know a lot of this. 

Fiona also said that if you wanted to share the name of the care home, she can talk to the education officer in your area to see if they can approach the home to offer training. I know that you have been in contact with this team before but if you'd like to get in touch, you can contact her directly at [email protected]

I hope that helps.

Ezinda

 

 

 

20

 

 

Thank you all for your posts,

Ezinda I do appreciate what you are saying and the home has had a visit from a regional educator but what is not taken into account with these talks is that a general presentation is not that helpful as pwp's are so individual and the talk needs to address the person in the home's disease and problems,plus the turnover of staff in care homes is huge, you have no idea unless you have someone in one.

I have offered to talk about my husbands needs many times but unless the home takes up that offer you are stuck, what they don't understand is their care and lives would be so much easier and the person with parkinson's would have much better care and life. Our retired PD nurse said to me last week that I have had to fight for the twenty years she has known us never mind the years before that, but I am stuck as there is nowhere else for him to go, that's my point about lack of good homes for Pwp's a friend of mine moved her husband six times before he died because of poor care, I hope that some of you have found the right home for your family.

It is not just the homes where the problem lies as I have said it's doctor's and nurses and the disjointed way pwp's are looked after, what has happened to the multi disciplinary clinic's at least they were usually very good.

My husband was visited by a CPN and the home didn't tell him that my husband had tried to kill himself standing shaking in the middle of the road just a few days before so of course his report didn't include that, I could go on forever but get so tired of the struggle and I am doing the absolute best for my husband, this is where men carer's have an advantage they can usually manage to keep their partner home for longer simply because they are physically stronger.

Thank you all once again we are off to see another surgeon on Wednesday about a possible operation which of course is high risk for my husband but he can't go on as he is bless him.

Keep your chin's up and keep fighting for better care and services

kind regards

vivian