Quote "f we include these other non-substance addictions, there are not too many people who are not affected. Some people ARE addicted to being right, OR proving that others are wrong. This is one of the teachings of Buddhism and other spiritual paths that originated in Asia - that the cause of our suffering as humans is our "attachment" - we could as easily refer to it as addiction - to our view of the way things are and the discrepancy between between our view of reality and the way we think or know things "should" be."
Rot.
Kyloe
Read it yourself. Mayo Clinic 24 March 2011.
22% on medium dose Das have pathological OCDs.
http://www.thepharmaletter.com/file/103081/mayo-clinic-researchers-tie-parkinsons-drugs-to-impulse-control-problems.html
Now let us get on with helping each other.
Read it yourself. Mayo Clinic 24 March 2011.
22% on medium dose Das have pathological OCDs.
http://www.thepharmaletter.com/file/103081/mayo-clinic-researchers-tie-parkinsons-drugs-to-impulse-control-problems.html
Now let us get on with helping each other.
And an extract to convince you to read it----includes the statistic 1 in 3 on higher doses will suffer
"During this time, movement disorder physicians at Mayo Clinic were keenly aware that impulse control disorders could occur with these dopamine agonist drugs. If they encountered a patient who was taking this drug, they asked them or an accompanying family member whether or not they had noticed any new type of behavior. What we found was that in as many as 22 percent of patients during that two-year period had a new onset impulse control disorder," she says.
The study found that the higher the dose, the greater the likelihood of an impulse control behavior. "One in four patients who were on a medium therapeutic dose of the medication had an impulse control disorder," Dr. Hassan says. "For patients who were taking a higher range of the medication, about one in three developed an impulse control disorder."
Patients taking dopamine agonists should be aware of potential behavioral changes so they can be caught early, before they or their families are harmed, Dr. Hassan says. Once a new behavior is identified, reducing or stopping the medication usually resolves the problem over a few days to a month, she says.
"During this time, movement disorder physicians at Mayo Clinic were keenly aware that impulse control disorders could occur with these dopamine agonist drugs. If they encountered a patient who was taking this drug, they asked them or an accompanying family member whether or not they had noticed any new type of behavior. What we found was that in as many as 22 percent of patients during that two-year period had a new onset impulse control disorder," she says.
The study found that the higher the dose, the greater the likelihood of an impulse control behavior. "One in four patients who were on a medium therapeutic dose of the medication had an impulse control disorder," Dr. Hassan says. "For patients who were taking a higher range of the medication, about one in three developed an impulse control disorder."
Patients taking dopamine agonists should be aware of potential behavioral changes so they can be caught early, before they or their families are harmed, Dr. Hassan says. Once a new behavior is identified, reducing or stopping the medication usually resolves the problem over a few days to a month, she says.
If the obvious doubters of devastating effects of DA'S do not agree with the evidence posted on this thread please please do not post. as before have your own thread ,
I write this from personal experience the effects are bad enough and to see a loved one turn into someone you do not know is devastating but to read the views of the 'doubters' on this thread exacerbates the devastation.
I certainly do not mean to be contentious , this comes from the heart x
I write this from personal experience the effects are bad enough and to see a loved one turn into someone you do not know is devastating but to read the views of the 'doubters' on this thread exacerbates the devastation.
I certainly do not mean to be contentious , this comes from the heart x
Hi,
I don,t believe there are limitations on this forum of where to post,especially when the subject matter is smack bang in your face.Being on DA,s i feel i am capable of looking from both sides of the fence.In other words,taking tablets increases certain functions to varying degrees.If understanding this and being aware of possible OCD,s it is a case of monitoring the situation whilst balancing on the fence.Things can be tweaked,changed,decreased,increased to prevent falling off the wrong side.Anybody,especially with a partner or carer,can do this.Alarm bells do ring and help can be sought.All pwp coping well on DA,s are aware of the dangers and yes they do use willpower and self control in their fine balancing act.Its not hard,i notice things on the leaflet pawing at me,trying to unbalance me.To say never mind i give up pull me into OCD mayhem would be easy.
Everyone has control of their own lives and to totally switch the blame without having a good hard look at why you suffered preventable catastrophic/compulsive disorders is an easy way of ignoring the real facts.There are many people as both Kyloe and i have said in normal everyday life suffering from OCD,s without taking DA,s.I think that this fact boosts any percentage figures to unnatural proportions.The simple fact is if you don,t,don,t want,or ignore what your body is feeling,maybe in an an exciting and interesting way.Then you only have yourself to blame.The information is all there NOW.The past is gone,awareness of what can be experienced is here and if ignored then don,t go blaming the Neurologists,people who can cope and the drug manufacturers.Move on,learn,as all this constant complaining is OCD in itself.
All the best
Titan
I don,t believe there are limitations on this forum of where to post,especially when the subject matter is smack bang in your face.Being on DA,s i feel i am capable of looking from both sides of the fence.In other words,taking tablets increases certain functions to varying degrees.If understanding this and being aware of possible OCD,s it is a case of monitoring the situation whilst balancing on the fence.Things can be tweaked,changed,decreased,increased to prevent falling off the wrong side.Anybody,especially with a partner or carer,can do this.Alarm bells do ring and help can be sought.All pwp coping well on DA,s are aware of the dangers and yes they do use willpower and self control in their fine balancing act.Its not hard,i notice things on the leaflet pawing at me,trying to unbalance me.To say never mind i give up pull me into OCD mayhem would be easy.
Everyone has control of their own lives and to totally switch the blame without having a good hard look at why you suffered preventable catastrophic/compulsive disorders is an easy way of ignoring the real facts.There are many people as both Kyloe and i have said in normal everyday life suffering from OCD,s without taking DA,s.I think that this fact boosts any percentage figures to unnatural proportions.The simple fact is if you don,t,don,t want,or ignore what your body is feeling,maybe in an an exciting and interesting way.Then you only have yourself to blame.The information is all there NOW.The past is gone,awareness of what can be experienced is here and if ignored then don,t go blaming the Neurologists,people who can cope and the drug manufacturers.Move on,learn,as all this constant complaining is OCD in itself.
All the best
Titan
.
Hi Titan.
Despite your own total lack of experience of the DA/OCD mental condition we've been discussing for the last few weeks, you arrogantly continue to ignore everything we've told you - despite many appalling case histories and a scientific world whose published results exactly match what we are saying.
And you have offered us nothing to support your "willpower" theories in light of the Neuropsychology statement (recently discussed here) that "willpower cannot combat such a chemical onslaught on the brain's function". You offer us "Everyone has control of their own lives". I somehow don't think the professionals would be persuaded by this neat (but untrue) soundbite.
As for OCD sufferers who don't take DAs, I'm not interested - they are outside my brief. Read this thread's title: the first two words may provide a clue.
And please stop saying "the past is gone". It isn't. I am still regularly coming across folk who were first prescribed DAs more than 10-12 years ago, when no-one even knew about these side effects. Once they were known about no-one bothered to tell these earlier "customers", and they have been out of their boxes ever since, not knowing why.
You say that there are no restrictions on who can post where on the forum; this is true. But all you were being asked by Bubble was to show a smidge of sensitivity towards a family which has been to hell and back (an experience you may yet have, as your DA doses increase), and which is still very shaky from that experience. For them to then hear your co-doubters effectively claim that their only real problem was one of a lack of sufficient willpower must be utterly devastating. Is it really necessary for you to be so unfeeling towards a family which is still in so fragile a state?
Take care.
Ray.
.
Hi Titan.
Despite your own total lack of experience of the DA/OCD mental condition we've been discussing for the last few weeks, you arrogantly continue to ignore everything we've told you - despite many appalling case histories and a scientific world whose published results exactly match what we are saying.
And you have offered us nothing to support your "willpower" theories in light of the Neuropsychology statement (recently discussed here) that "willpower cannot combat such a chemical onslaught on the brain's function". You offer us "Everyone has control of their own lives". I somehow don't think the professionals would be persuaded by this neat (but untrue) soundbite.
As for OCD sufferers who don't take DAs, I'm not interested - they are outside my brief. Read this thread's title: the first two words may provide a clue.
And please stop saying "the past is gone". It isn't. I am still regularly coming across folk who were first prescribed DAs more than 10-12 years ago, when no-one even knew about these side effects. Once they were known about no-one bothered to tell these earlier "customers", and they have been out of their boxes ever since, not knowing why.
You say that there are no restrictions on who can post where on the forum; this is true. But all you were being asked by Bubble was to show a smidge of sensitivity towards a family which has been to hell and back (an experience you may yet have, as your DA doses increase), and which is still very shaky from that experience. For them to then hear your co-doubters effectively claim that their only real problem was one of a lack of sufficient willpower must be utterly devastating. Is it really necessary for you to be so unfeeling towards a family which is still in so fragile a state?
Take care.
Ray.
.
Will power 
Well.....i gave up smoking using nothing but will power and sheer determination, stopped dead, never touched another cigarette for the rest of my life.
Well.....i gave up smoking using nothing but will power and sheer determination, stopped dead, never touched another cigarette for the rest of my life.
many thanks Ray your reply to T and k was more succinct than my usual .
T and K i am not saying that you are not able to post your opinion on this thread but as Ray says you have not experienced OCD/ICD your posts appear to be insensitive and insulting.I find your comments insulting, i am well aware in my professional role of drugs and there affects but my question is your continual doubting of the effects of DA's and insensitive posts example ;k's above is this ICD but with the perpetrator in denial.!!!!
T and K i am not saying that you are not able to post your opinion on this thread but as Ray says you have not experienced OCD/ICD your posts appear to be insensitive and insulting.I find your comments insulting, i am well aware in my professional role of drugs and there affects but my question is your continual doubting of the effects of DA's and insensitive posts example ;k's above is this ICD but with the perpetrator in denial.!!!!
titan,
I see despite my pleas for common sense to prevail, you continue to subject this thread to what is now becoming a daily dose of titan's personal view.
Many of your views are at odds with Qualified research on the risks of OCD side effects from DA's. Also your belief that every Neurologist is as good as yours and adequately warns patients, is just factually wrong! Your views that the Drug companies are doing there bit in giving patients upto date and accurate info, is once again factually wrong. Your continued stance that everyone has the same level playing field of will power, self control and awareness, is not true.
You seem to choose to ignore every single piece of factual evidence that's presented to you? It feels to me you prefer to present an argument based on your own opinions and experiences?
all the best
bluey
I see despite my pleas for common sense to prevail, you continue to subject this thread to what is now becoming a daily dose of titan's personal view.
Many of your views are at odds with Qualified research on the risks of OCD side effects from DA's. Also your belief that every Neurologist is as good as yours and adequately warns patients, is just factually wrong! Your views that the Drug companies are doing there bit in giving patients upto date and accurate info, is once again factually wrong. Your continued stance that everyone has the same level playing field of will power, self control and awareness, is not true.
You seem to choose to ignore every single piece of factual evidence that's presented to you? It feels to me you prefer to present an argument based on your own opinions and experiences?
all the best
bluey
Kyloe, your comprision of self willpower giving up smoking, to that of giving up DA's if the side effects take control is just not credible. Maybe you should go and do a bit more research on this issue before making comments like that?
Regards
bluey
Regards
bluey
The facts
Most people who experience Impulsive control disorder don't seek help until alarm bells begin to ring!! Unfortunately much devastation and loss has occurred by the time this happens.
Most people who experience Impulsive control disorder don't seek help until alarm bells begin to ring!! Unfortunately much devastation and loss has occurred by the time this happens.
hi cutie,
Your recent post attaching the OCD Research from 2005 was a good reminder of the journey over the last 10 years.
In 2002, there was nothing reported linking OCD side effects to DA's.
By 2005, research partly funded by the Drug companies, highlighted the OCD issue stating upto 5% ( 5 in every 100 ) of people were affected.
By 2007, research again partly funded by the drug companies, increased the risk to 14% ( 14 in every 100 )of people taking DA's.
By 2009, research (partly funded by those drug companies) increased the risk upwards to 17% (17 in every 100 ).
The latest research in 2011 (again funded by the drug companies) now puts the figure at 22% ( 22 in every 100 ).
Yet those same drug companies who have given money towards these various research projects and support the findings, give PD patients a completely different view of the risks via the patient info leaflets?
They evaluate the risk as being less than 1% ( 1 in every 1000 ).
THIS PROVES THEY SPEAK WITH FORK TONGUE AND ARE GUILTY OF DOUBLE STANDARDS.
THEY ALSO DANGEROUSLY MIS-LEADING PWP AS TO THE RISKS.
If you had to go into hospital for a routine operation and was told the risk of serious complications was less than 1%, you would think that's a risk worth taking. However if the doctor said the risk was 22% (almost 1 in 4) would you still go ahead with the operation?
These are the facts titan.................
Your recent post attaching the OCD Research from 2005 was a good reminder of the journey over the last 10 years.
In 2002, there was nothing reported linking OCD side effects to DA's.
By 2005, research partly funded by the Drug companies, highlighted the OCD issue stating upto 5% ( 5 in every 100 ) of people were affected.
By 2007, research again partly funded by the drug companies, increased the risk to 14% ( 14 in every 100 )of people taking DA's.
By 2009, research (partly funded by those drug companies) increased the risk upwards to 17% (17 in every 100 ).
The latest research in 2011 (again funded by the drug companies) now puts the figure at 22% ( 22 in every 100 ).
Yet those same drug companies who have given money towards these various research projects and support the findings, give PD patients a completely different view of the risks via the patient info leaflets?
They evaluate the risk as being less than 1% ( 1 in every 1000 ).
THIS PROVES THEY SPEAK WITH FORK TONGUE AND ARE GUILTY OF DOUBLE STANDARDS.
THEY ALSO DANGEROUSLY MIS-LEADING PWP AS TO THE RISKS.
If you had to go into hospital for a routine operation and was told the risk of serious complications was less than 1%, you would think that's a risk worth taking. However if the doctor said the risk was 22% (almost 1 in 4) would you still go ahead with the operation?
These are the facts titan.................
Ok we've established how bad things can get.
Now how about what can be done about it.
Preventative strategies for newbies and suggested support mechanisms.
Personal experience of how you realised you had a problem and how you dealt with it.
How did you get yourself off DAs?
How did you cope?
What support would be helpful for someone in that situation?
Now how about what can be done about it.
Preventative strategies for newbies and suggested support mechanisms.
Personal experience of how you realised you had a problem and how you dealt with it.
How did you get yourself off DAs?
How did you cope?
What support would be helpful for someone in that situation?
i bin told they can not operate on me back ,say the recovery for me not good,all down to me health probs,as u no i bin on pd meds along with other meds for 10years now,i lost a kidney last year ,and me dr said it was down to meds in me body of a good lengh of time ,they were affectin me organs,i was on das for few years before that ,and had bad complusions got worse and worse ,like it does to so many whos body can not tolerate a da,the reason of me post its just to make a coment about wot the drugs can do to oragns over a long time ,not just the effects they have on our brains to ,ihope ive posted in the corrct thread x
ive just read leyther post ,the answer quite simple boput how did i get off das,or no i had got to the worse stage to do somethin bout it ,is that break downs over lot of things,self harmin cuse not of copin with wot was happinin to me ,eventually after along time of freinds and family and carers diggin at me i went to the gp,and from the time i told him in floods of tears cus i thought me life was over ,he brought me out of it ,with councillin lot of care from people ,bein wached close cus of wot i was doin ,had to go way for a week to a place to be looked after and kinda weened off well start of it ,a long progress but got there in the end,and now im happy ,back to me old self x
Hi all.
The first public discussion about links between DAs and OCDs that I'm aware of was a BBC TV programme on Monday 11 August 2003. This put the risk at 1 in 200!
http://news.bbc.co.uk/1/hi/health/3142615.stm
Unfortunately by that time I'd been on DAs for 3 years (since 2000) and was completely out of my tree. I didn't even discover that the programme had existed until late 2007, and I never received ANY warnings from ANYONE prior to discovering the truth for myself on the Internet - also in 2007.
Ray.
The first public discussion about links between DAs and OCDs that I'm aware of was a BBC TV programme on Monday 11 August 2003. This put the risk at 1 in 200!
http://news.bbc.co.uk/1/hi/health/3142615.stm
Unfortunately by that time I'd been on DAs for 3 years (since 2000) and was completely out of my tree. I didn't even discover that the programme had existed until late 2007, and I never received ANY warnings from ANYONE prior to discovering the truth for myself on the Internet - also in 2007.
Ray.
hi Leyther,
You raise some very valid points, However a lot of them should be directed at PUK?
I have tried on numerous occasions to get PUK engaged in issues like; Increased awareness among all health professionals, getting drug companies to provide up to date accurate patient info, and for PUK to provide more dedicated help, resource and support for those affected. So far there has been a lot of promises but little or no action on their part!
best wishes
bluey
You raise some very valid points, However a lot of them should be directed at PUK?
I have tried on numerous occasions to get PUK engaged in issues like; Increased awareness among all health professionals, getting drug companies to provide up to date accurate patient info, and for PUK to provide more dedicated help, resource and support for those affected. So far there has been a lot of promises but little or no action on their part!
best wishes
bluey
I agree Bluey
They have both the resource and the influence to get the message out there.
I feel a lot of money and resources are wasted on finding out what we already know.
I have spoken to several newbies who are taking mirapexin and I am glad to say they have been made aware of the problems and so have their partners. Encouraging that the message is getting through and they are able to get the benefit of the drug.
People suffering with DA driven compulsions, however, need a support network that is based on an understanding of their problems.
I believe that we as people who have been through the experience can help.
I have tried to help people directly with some success but this is not satisfactory in the long run.
We need to train the neuros directly or there needs to be a trained resource who have the time to dedicate to this problem and don't have the potential for indiscretions. ie a person with hypersexuality issues being supported by someone who has hypersexuality tendencies is not a good idea.
The PUK and the medical profession need to recognise that there is an untapped body of expertise at their disposal ie Us.
regards
Mark (Leyther)
PS Titan please would you PM me.
They have both the resource and the influence to get the message out there.
I feel a lot of money and resources are wasted on finding out what we already know.
I have spoken to several newbies who are taking mirapexin and I am glad to say they have been made aware of the problems and so have their partners. Encouraging that the message is getting through and they are able to get the benefit of the drug.
People suffering with DA driven compulsions, however, need a support network that is based on an understanding of their problems.
I believe that we as people who have been through the experience can help.
I have tried to help people directly with some success but this is not satisfactory in the long run.
We need to train the neuros directly or there needs to be a trained resource who have the time to dedicate to this problem and don't have the potential for indiscretions. ie a person with hypersexuality issues being supported by someone who has hypersexuality tendencies is not a good idea.
The PUK and the medical profession need to recognise that there is an untapped body of expertise at their disposal ie Us.
regards
Mark (Leyther)
PS Titan please would you PM me.