This is in no way medical advice, just the sharing of my own experience with a dopamine agonist and what happened after I weaned myself of it, together with notes about the drug. I started taking myself off the medication called "ropinerole" a while back, and have not used it at all for a month now. The reason I did so is because I independently became convinced the side effects of the drug were worse for myself than any benefits.
I'm including a link supplied by Lee John Pursall on severe withdrawal issues from dopamine agonists http://jamanetwork.com/jou…/jamaneurology/fullarticle/799048
On the third day of withdrawal I started feeling grinding depression and high anxiety about my own personal situations. So I pulled into play all the things I know about combating this. I started using my bright light SAD lamp in earnest. I started going out for walks around the block - something I have only done once since moving back to my parents. Lo and behold, I found the pavement around here is mostly slabs - which means I can use the visual cues of the patterns of cracks to help me really walk more properly and step out some of the symptoms. I started speaking to people more - on the phone, online and even visiting family - again something I have barely done in a long time. These days, I take an half hour to an hours walk while in an "off" state every day.
The depression and anxiety was not only quickly addressed, but I also began to realize that the ropinerole itself had been causing marginal obsessive-compulsive behaviours around online activities. Worse still, it had made me anti-social and prone to avoidance behaviors, unable to face things I found stressful and hence increasing those stressors markedly.
My pain, rigidity and stiffness also began decreasing noticeably by the day. Each day, as the ropinerole was flushed from my system, I was having better "ons" without the disabling dyskinesia I would have got weeks before. I am able to access movement more, and thus to move my way out the "offs" or at least ease the pain of them, more. I can pick up my smovey rings and use them more effectively, for example.
My mind is becoming sharper and my clarity of thought is improving rapidly.
I can quantify all this, and have an external observer, because I can count how many times I have to ask my mum [currently my primary carer] for help, both during the day and at night. It has dropped from frequently to rarely. In fact I haven't had to get my mum up in the night at all lately.
So, counter-intuitively perhaps, by markedly reducing my drug burden I have managed to get my independence back. Right now, I feel I have rolled back my Parkinson's Disease by years.
Now, everyone is different, so I am not advising any one to try this without consulting their neurologist. However, it does seem to me that I may have fixed myself through Out-Thinking Parkinson's more than I realized and a long time ago, but this was hidden by the inappropriate [for me] prescription.
NOTES ON ROPINROLE - A DOPAMINE AGONIST USED IN THE TREATMENT OF PARKINSON'S AND RESTLESS LEG SYNDROME
Taken from the Manufacturer's Leaflet with *Notes by Gary Sharpe*
pregnant, breast feeding, under 18, liver disease, heart complaints, mental health, unusual urges, intolerance to some sugars inc. lactose.
* mental health issues are part and parcel of PD! *
* food intolerance, especially lactose are common in people with PD!*
PROBLEMS WITH OTHER MEDS:
some anti-depressants, some meds for mental health, some meds for nausea, HRT, some antibiotics, drugs which block dopamine in the brain, any other meds for PD
*dopamine agonist are commonly prescribed as a cocktail with other meds for PD, in a very ad hoc fashion by healthcare professionals!*
additional blood tests required if taking Vitamin K antagonists such as Warfarin.
If taken with L-DOPA based PD drugs may develop other side effects over time:
Uncontrollable movement [Dyskinesia], feeling confused
may cause urge to gamble, increased sexual urges
DRIVING AND MACHINERY
may make people feel extremely sleepy or falling asleep very suddenly without warning
may increase in restless leg like symptoms
Very Common: nausea, drowsy, fainting
Common: hallucinations, dizzy, vomit, heartburn, leg swelling
Uncommon: drop in blood pressure on standing, very sleepy in daytime, sudden onset of sleep, delirium, delusions, paranoia, inability to resist impulse or temptation to do things which could be harmful to self or others, including: gambling, unusual sexual interests, shopping, binge eating
Very Rare: change in liver function, swelling of face, lips, mouth, tongue, throat, aggressive behaviours
Sudden stoppage may make PD symptoms quickly become much worse.
*I am experiencing much less dyskinesia and much less "zonking out" since stopping the drug, therefore for me, the combination of l-dopa and dopamine agonist was indeed worsening the dyskinesia*
* THIS IS NOT MEDICAL ADVICE, SIMPLY THE SHARING OF MY OWN SUMMARY NOTES FROM THE MANUFACTURERS LEAFLET TOGETHER WITH MY OWN ANECDOTES*