Hi ,I am trying to sort myself out before going into trouble ! Im on ropinorole slowrelease 20mg and find that buying things for ME is my obssesion , I have talked to my pd nurse , given my acces card to my dad , made hubby change next and paypal password and Im trying , but still feel as if im going to think of a way around all this blocking so I can buy more clothes shoes etc , I know its the meds and I know its up to me , Im on laptop all the time browsing but its making life miserable for everyone , even daughters who are young are in on the STOP MUM SPENDING and are brilliant at it . Any tips , I know time limit on laptop , no wilpower is another problem , anyone else on same meds with addiction
hi ponco,
I think you need to see your Neuro ASAP, with a view to cutting back on the ropinirole and replacing it with non DA based medication. Is your Neuro aware of your OCD shopping problem and what did he/she say? It sounds to me you have crossed the line and your problem is moving into dangerous waters. Because despite the controls you and your family put in place, your still looking to find ways around them.
I urge you to act now before its to late. Also are you just using slow release ropinirole 24/7?
best wishes
bluey
I think you need to see your Neuro ASAP, with a view to cutting back on the ropinirole and replacing it with non DA based medication. Is your Neuro aware of your OCD shopping problem and what did he/she say? It sounds to me you have crossed the line and your problem is moving into dangerous waters. Because despite the controls you and your family put in place, your still looking to find ways around them.
I urge you to act now before its to late. Also are you just using slow release ropinirole 24/7?
best wishes
bluey
hello ponco,I take requip XL(ropinerole slow release)and yes I have and still have the internet shopping habit you describe. Whilst I cannot say for certain the drug is to blame (it may be boredom), I do know that before I started to take it I had never purchased anything via the internet.
I was aware of feeling uncomfortable about it & from this forum learned that the medication may underly my shopping habit.
It has not (yet) caused me £ problems & I don't want it to! This is what I do:
When about to click " confirm purchase", I go away from the PC and spend a few minutes asking myself the followwing Q:
Do I really like it?
Do I really want it?
Do I really need it?
Can I afford it?
What else could I use the £ for?( my son? something needed in the house? etc)
I do not hide what I am doing & often ask O/Hfor his opinion (usually he is not in the slightest bit interested!)
I havefound that this works better for me than putting restrictions on PC time or giving my debit card to O/H for safe keeping
Good luck
I was aware of feeling uncomfortable about it & from this forum learned that the medication may underly my shopping habit.
It has not (yet) caused me £ problems & I don't want it to! This is what I do:
When about to click " confirm purchase", I go away from the PC and spend a few minutes asking myself the followwing Q:
Do I really like it?
Do I really want it?
Do I really need it?
Can I afford it?
What else could I use the £ for?( my son? something needed in the house? etc)
I do not hide what I am doing & often ask O/Hfor his opinion (usually he is not in the slightest bit interested!)
I havefound that this works better for me than putting restrictions on PC time or giving my debit card to O/H for safe keeping
Good luck
I've just seen blue eyes post and yes medication management is essential. I told my new neuro who put a stop to the planned increase of ropinerole & introduced sinemet.
Thankyou for your concern and suggestions , as Im only 40 sinemet is not an opption at the moment , and I asked if I could cut down on ropinorole but symptoms of pd will be worse , any tricks or ideas how to stop , never had to stop anything before , eat anything , didnt smoke so Ill have to make myself beat this xxx
I can relate to your problem Ponco, I too became a shopoholic whilst taking Ropinerole. I had to come off it, but not before I'd done many credit cards in to the tune of £60000. Still paying the debts slowly but God knows what would have happened if I hadn't stopped taking it. At that time, which was about 9/10 years ago, there were no warning so I didn't know what was happening to me, at least you are forewarned. It must be very hard for you but at least you are getting to grips with it, although I'm not sure if you can actually fight the drugs. Keep trying but if in doubt, get out!!!
Glenchass
Glenchass
forgive me ponco if I misunderstand, but I was not aware that sinemet or any other non DA medication is prescribed only to the older PwP? I believe it is not recommended for those under 18. Perhaps you are, quite understandably,choosing to delay introduction of a levodopa drug.?
However, I do think that if you think ropinirole is affecting your behaviour to the extent that it is causing you & your family concern, then your best course of action is to discuss this with your consultant. I don't think that powerful drugs can be tricked into submission
With best wishes
However, I do think that if you think ropinirole is affecting your behaviour to the extent that it is causing you & your family concern, then your best course of action is to discuss this with your consultant. I don't think that powerful drugs can be tricked into submission
With best wishes
Hi ponco,
Going through exactly the same.My ups and downs are all over the Dopamine Agonist threads.The most important thing is that you have realised there is a problem.Mine was sitting in the bookies,on the racing sites,pages of paper everywhere with form,systems,tips.People i know would come up to me fascinated in all the stuff in front of me.One fella i have known well since i started backing horses 27 years ago said to me not long ago,"i worry about you,you are getting worse",when he saw all the papers in front of me.I laughed it off.That being just the tip of the iceberg.Knowing deep in side i was obsessed,but whether boredom,the Mirapexin,or whatever carried on regardless because it made me happy.
For the last 11 days i have not put a bet on,bought a paper,visited racing sites,i handed all money responsibilities to my Wife while i levelled myself out.Most important of all,informed Neurologist.Choosing not to reduce the DA and not add sinemet because of young age.I am unfortunately some may say ,trying to control urges through awareness and family also being on the lookout.Time will tell.
I think it is early for levadopa introduction in your case,but everyone is different.Maybe like you,interests drift elsewhere,but you are recognising it.Take advice,involve your family and make the decision you think is right for you and your own piece of mind.
Good luck,chat again any time
All the best
Titan
Going through exactly the same.My ups and downs are all over the Dopamine Agonist threads.The most important thing is that you have realised there is a problem.Mine was sitting in the bookies,on the racing sites,pages of paper everywhere with form,systems,tips.People i know would come up to me fascinated in all the stuff in front of me.One fella i have known well since i started backing horses 27 years ago said to me not long ago,"i worry about you,you are getting worse",when he saw all the papers in front of me.I laughed it off.That being just the tip of the iceberg.Knowing deep in side i was obsessed,but whether boredom,the Mirapexin,or whatever carried on regardless because it made me happy.
For the last 11 days i have not put a bet on,bought a paper,visited racing sites,i handed all money responsibilities to my Wife while i levelled myself out.Most important of all,informed Neurologist.Choosing not to reduce the DA and not add sinemet because of young age.I am unfortunately some may say ,trying to control urges through awareness and family also being on the lookout.Time will tell.
I think it is early for levadopa introduction in your case,but everyone is different.Maybe like you,interests drift elsewhere,but you are recognising it.Take advice,involve your family and make the decision you think is right for you and your own piece of mind.
Good luck,chat again any time
All the best
Titan
I was told that sinemet gives you side effects if taken to early on ,and pd nurse and doctor are trying to keep me from them for as long as they can ,,,now in a way its spending against twitching and sudden movements , my pocket would be better off with me twitching . I would feel much better on sinemet but should I take it -not that Ive been offered it as Ive just "come out" or as pd nurse says fight for a few weeks and see how things go xxx
Hi Ponco,
Yes,i have been advised to delay,although a reduction of Mirapexin and addition of Sinemet was original plan.With Neuros okay decided to keep on same dose of Mirapexin, with a review in 3 months.It is all a juggling act Ponco.Just stay on your toes and do the best that you can.Its a headache though isen,t it.Nothing is easy,ive just been on the phone to pd nurse,the Anti depressant prescribed cannot bbe taken in conjunction with Azilect,there appears also no alternative.So its dump the Azilect for the Anti depressant or carry on as i am and muddle through.
All the best
Titan
Yes,i have been advised to delay,although a reduction of Mirapexin and addition of Sinemet was original plan.With Neuros okay decided to keep on same dose of Mirapexin, with a review in 3 months.It is all a juggling act Ponco.Just stay on your toes and do the best that you can.Its a headache though isen,t it.Nothing is easy,ive just been on the phone to pd nurse,the Anti depressant prescribed cannot bbe taken in conjunction with Azilect,there appears also no alternative.So its dump the Azilect for the Anti depressant or carry on as i am and muddle through.
All the best
Titan
hi ponco,
I think you said it yourself, its a choice you must make. Stay with Ropinirole and run the risk of your OCD getting out of control, or move to sinemet and increase the possibility of involuntary movements side effects in years to come.
My biggest concern from what you said in your opening post, is that you are looking for ways to get around the "safety net" put in place by those around you? This rings alarm bells for me and i think your playing a dangerous game. However at the end of the day i guess its your choice! I know when i was 43, i would rather of taken the possibility of involuntary movements at some later stage, than losing my job, partner, family and going bankrupt due to OCD side effects. However unlike yourself, i did not have that choice. This is where i agree with titan, because improved awareness (albeit not as good as it should be) allows you to retain some control over the situation. Until of course you cross that line, then you will lose control, believe me!
I hope you make the right choice and i wish you all the best in what is a difficult situation.
best wishes
bluey
I think you said it yourself, its a choice you must make. Stay with Ropinirole and run the risk of your OCD getting out of control, or move to sinemet and increase the possibility of involuntary movements side effects in years to come.
My biggest concern from what you said in your opening post, is that you are looking for ways to get around the "safety net" put in place by those around you? This rings alarm bells for me and i think your playing a dangerous game. However at the end of the day i guess its your choice! I know when i was 43, i would rather of taken the possibility of involuntary movements at some later stage, than losing my job, partner, family and going bankrupt due to OCD side effects. However unlike yourself, i did not have that choice. This is where i agree with titan, because improved awareness (albeit not as good as it should be) allows you to retain some control over the situation. Until of course you cross that line, then you will lose control, believe me!
I hope you make the right choice and i wish you all the best in what is a difficult situation.
best wishes
bluey
Hi Ponco,
What you also need to be aware of is if you're trying to stop one addiction you may well replace it with something else that gives you the same euphoric, risk taking high of internet shopping. The risk element ~ secrecy, deceit, hiding things, not really being able to afford it...etc, is what fuels the behaviour and drives you to find an alternative....something bigger to give you the same high. Once what you are doing is revealed it no longer seems pleasurable!
What you also need to be aware of is if you're trying to stop one addiction you may well replace it with something else that gives you the same euphoric, risk taking high of internet shopping. The risk element ~ secrecy, deceit, hiding things, not really being able to afford it...etc, is what fuels the behaviour and drives you to find an alternative....something bigger to give you the same high. Once what you are doing is revealed it no longer seems pleasurable!
PONCO.
Pardon my language, but GET THE HELL OFF DOPAMINE AGONISTS NOW.
You are clearly susceptible to their OCD side effects, and any Sinemet side effects are as nothing in comparison. You are playing with fire, tinkering about under the impression that you're in control, but you're not. Very soon your hands will slip from that greasy pole, and before you even know what's happening you'll be down in that pit possibly unable to ever properly return.
I spent 7 years down there. I lost my marriage, son, home, family, friends, career, savings, everything. About £2 million altogether, plus trouble with the police and a period in a psychiatric ward.
I'm more or less living in the gutter now, and unlikely to rise from it. I'm 60 years old (probably look 80 now), and was dx 10 years ago.
PLEASE DON'T FOLLOW IN MY DA FOOTSTEPS - CHANGE NOW!
Ray.
Pardon my language, but GET THE HELL OFF DOPAMINE AGONISTS NOW.
You are clearly susceptible to their OCD side effects, and any Sinemet side effects are as nothing in comparison. You are playing with fire, tinkering about under the impression that you're in control, but you're not. Very soon your hands will slip from that greasy pole, and before you even know what's happening you'll be down in that pit possibly unable to ever properly return.
I spent 7 years down there. I lost my marriage, son, home, family, friends, career, savings, everything. About £2 million altogether, plus trouble with the police and a period in a psychiatric ward.
I'm more or less living in the gutter now, and unlikely to rise from it. I'm 60 years old (probably look 80 now), and was dx 10 years ago.
PLEASE DON'T FOLLOW IN MY DA FOOTSTEPS - CHANGE NOW!
Ray.
From the Web:
"Although there are many adverse effects associated with L-DOPA, in particular psychiatric ones, it has fewer than other antiparkinsonian agents, such as anticholinergics and dopamine receptor agonists."
The problem for us poor patients is that every neurologist comes across as very knowledgable and experienced, and their own confidence in THEIR preferred medication solution seems perfectly sound and viable. We're therefore happy to go along with their recommendations; we have no reason not to.
Th trouble is, there are as many solutions as Neuros. These "experts" argue amongst themslves all the time, and change their minds every time a new product comes onto the market, especially if there's a free conference and lunch on offer somewhere.
To help you take the right course you can of course trawl this forum, but you'll still find disagreement. I'd say "if in doubt start with whichever option can produce the least bad side effects should anything go wrong."
R.
"Although there are many adverse effects associated with L-DOPA, in particular psychiatric ones, it has fewer than other antiparkinsonian agents, such as anticholinergics and dopamine receptor agonists."
The problem for us poor patients is that every neurologist comes across as very knowledgable and experienced, and their own confidence in THEIR preferred medication solution seems perfectly sound and viable. We're therefore happy to go along with their recommendations; we have no reason not to.
Th trouble is, there are as many solutions as Neuros. These "experts" argue amongst themslves all the time, and change their minds every time a new product comes onto the market, especially if there's a free conference and lunch on offer somewhere.
To help you take the right course you can of course trawl this forum, but you'll still find disagreement. I'd say "if in doubt start with whichever option can produce the least bad side effects should anything go wrong."
R.
Anyone concerned about their medication should read Lucille Leader's book; 'Parkinson's Disease, Reducing Symptoms with Nutrition & Drugs'. I first got on to the nutrition trail on some US websites and one of them pointed to Dr Leader. She is based at the London Pain Clinic and is beginning to train nutritionist in this country, although I have yet to find one. I have asked my PD nurse to help me with what is quite a complicated regime but have been ignored. (I get Dyskinesia but not compulsive behaviour .. yet!) I have just been prescribed Ropinirole CR (does this have a different effect from ordinary Ropinirole?) I was on 3 x 5 mg daily but the CR only comes in 8mg, so without batting an eyelid my script was increased entirely unecessarily by 1mg. In fact, I am only taking one tablet (8mg) and its not bad. I can always top up with a 5mg later in the day. (I think thats OK?)I have also managed to reduce the Sinamet from 4x 1-2 tabs a day to 4 x 1/2-1 tab a day and lost a bit of extra weight while I have been trying this diet. Not to keen on gluten free muesli, though. Its a bit like chewing gravel. I'd be interested to know if anyone out there has been treated by Dr Leader and what others think.
CR drugs are just the same as normal, but just slow release.
Hi Chrissie,
Ropinerole XL (formerly Ropinerole CR) is a slow-release form of ropinirole which allows a more convenient once-daily dosing schedule.
It is available in 2mg, 4mg, 6mg and 8mg. It might be available in higher dosages ~ Please see the following link
http://parkinsons-disease.emedtv.com/requip-xl/requip-xl-dosage.html
This means that you could take an 8mg and 6mg tablet together in the morning (1mg lower than your previous 15mg ropinirole daily dosage). However, since you have dropped your dosage to 8mg, a sudden increase would probably have side effects. Changes in medication should be done slowly and gradually and with professional guidance.
Your drug regime concerns me Chrissie, so does the fact that you've been ignored and left to try and tailor drugs to your needs. Are you still experiencing dyskinesias since you have been experimenting with drug dosages? Do you fluctuate drug dosages throughout the day? If so, I understand this can cause side effects and your body will become confused. I think you should contact your Neurologist or track down your PD Nurse asap and seek advice. You are not getting the support you should be receiving. You can also contact the Parkinson's UK Helpline 08088000303, it is an excellent service and allows you to talk to trained professionals.
Kind regards
Cutiepie
Ropinerole XL (formerly Ropinerole CR) is a slow-release form of ropinirole which allows a more convenient once-daily dosing schedule.
It is available in 2mg, 4mg, 6mg and 8mg. It might be available in higher dosages ~ Please see the following link
http://parkinsons-disease.emedtv.com/requip-xl/requip-xl-dosage.html
This means that you could take an 8mg and 6mg tablet together in the morning (1mg lower than your previous 15mg ropinirole daily dosage). However, since you have dropped your dosage to 8mg, a sudden increase would probably have side effects. Changes in medication should be done slowly and gradually and with professional guidance.
Your drug regime concerns me Chrissie, so does the fact that you've been ignored and left to try and tailor drugs to your needs. Are you still experiencing dyskinesias since you have been experimenting with drug dosages? Do you fluctuate drug dosages throughout the day? If so, I understand this can cause side effects and your body will become confused. I think you should contact your Neurologist or track down your PD Nurse asap and seek advice. You are not getting the support you should be receiving. You can also contact the Parkinson's UK Helpline 08088000303, it is an excellent service and allows you to talk to trained professionals.
Kind regards
Cutiepie
Did you hear any more on this, Cutiepie?
Ray..you CANNOT and MUST NOT tell this person to change their drugs. We ALL know how strongly you feel but, you do not have the authority, or the knowledge to give advice about other peoples drugs.
This person should calmly take her concerns to her doctors and medical professional staff.
Your advice can be noted and put into the information mix...but do NOT tell her what to do.
Chris
This person should calmly take her concerns to her doctors and medical professional staff.
Your advice can be noted and put into the information mix...but do NOT tell her what to do.
Chris
Hi.
In retrospect I would today word my post differently, However this website and forum are littered with reminders that forum members are not medically qualified, and that no medication changes should be underrtaken without the consultant's approval, so I don't think anybody is likely to just stop any medication as a result of this post.
Ray.
In retrospect I would today word my post differently, However this website and forum are littered with reminders that forum members are not medically qualified, and that no medication changes should be underrtaken without the consultant's approval, so I don't think anybody is likely to just stop any medication as a result of this post.
Ray.