Good luck BB, and your wife BW,
i am only on 10 mg of Citalopran so hopefully it wont take too long to come off them. Just hoping that I don't experience the awful anxiety that I used to suffer.
I am trying to learn 'mindful meditation' - less than 5 minutes of it and I am asleep - not sure if that the desired outcome but it will do for me!!
JUJUxx
I posted earlier about myoclonic jerks. Recently I found that ropinerol had been a partial answer.i was taking 8 mg sr and found I could stop the jerks or spasms by redcing down to 2 mg.Only problem was I had bad RLS at night and had to incresa to 4 mg.I also have a hernitated disc l5s1 and found exercises to help sciatica helped reduce the RLS.I still think somehow the jerks were caused by the epidural somehow which got just before the jerks started There is a condition called propriospinal myoclonus which can be brought on by epidurals.Also if I overdo the exercises it will trigger jerks
Hope it sheds some light for some of you.
Hi john947,
I'm on ropinirole but don't seem to get the 'jerks' as you say, come to think of it don't seem to get any bad reactions from taking it, I'm on 14mg.
PS I'm glad I don't!
Hi shefinn,
It might not be ropinerol as the jerks have returned but nothing like before.Im also on 7 25/100 sinemet.It seems many are on one or theo ther but not both if that makes a difference.My PD has gotten worse since going off the requip.Ive had to add 1 or 2 depending my activity.I overdid some yard work the other day and felt the worst I ever have so far with PDI came back the next day but learned a lesson to be moderate with exercise or pay the price.Im glad you have done well and don't mean to scare anyone off the drug which does work well for many.My jerks also seem worse if I haven't eaten in awhile.
Sometimes I wonder as the jerks do go way for awhile on their own and come back unexpectedly
Hi John
They say that the more energetic you are the worse your parkinsons is, so you do have to do things in moderation! Some of the meds we take can have different side effects and can cause a lot of different movements. I think we tend to know and learn how our own bodies react to certain things and we adjust to these reactions. I'm the same with the 'shakes', sometimes it's worse one day than the next with me, but hey ho we have to put up with it don't we!
Regards and take care Sheffy
Hi GG,
It sure would be nice if antidepressants did what they suppose to do.hahaThe only thing that depresses me is the state of healthcare today.Its bad enough having PD but try and find a old fashioned doctor.Its rush rush here in the states.Seems to be a career in itself to find a gem.I know there out there but where..
In reality i dont blame the doctors as much as the schools they went to who drilled the business model deeply into their conscience .Also another problem here is a doctor standing up for his diagnosis.
I only take 6 25/100 a day now.No meds for depression in decades.
The method does work.
There is an article in The Independent today revealing a new study that shows that Levadopa is linked to an increase in risk-taking behaviour.
The study was published in The Journal of Neuroscience.
However, the accompanying photo and article tells the story of a man who became addicted to gambling whilst taking dopamine agonists.
i am very worried.....has a new study found a greater link to Levadopa than previously ( around 7%) or is this a piece of inaccurate reporting?
if the former, where do those of us go who had to suffer the trauma of ICBs with DAs and changed to Levadopa to regain a saner existence?
Do we live in terror of a return of the devastating behaviour?
I would be grateful if the forum team would clarify what this new study has found.
Thank you, team.
In despair, again.
GG
Hi GG
It is still looming and rearing it's ugly head again and again, the prospect of having ICB's through medication prescribed for PWP. There are so many side effects with most of the meds attached to the treatment of parkinsons it is worrying. I may need to change or add to my meds, but the uncertainty of which one to accept when I visit my Neuro concerns me, it seems you end up with more disruption to your life on the meds your already prescribed without being afflicted with effects from the new meds.
Are we being guinea pigs or what
Regards Sheila
Hi GoldenGirl,
This has been passed on, someone will get back to you soon.
Best wishes,
Alethea
Digital Team
Thank you for your prompt response!
GG
Hi Golden girl,
My husband has just had his ropinerol reduced because of his aggression so he is on 2mg daily now and he will come off completely next week so some very difficult times for him ahead. He is a lot weaker anyway but it has made him more calm too I just hope he doesn't suffer too much in the process. I haven't been on here for ages as it just seems I spend all my energy keeping up with his situation and having my own health problems but I hope you are keeping your chin up, my cousin sent me a paper cutting about pwp's in Australia doing a joint legal case against Pfizer's because of side affects of taking cabergoline, interesting don't you think.
I did some training with a local educator to the staff and think it has made a difference but they change so often it is so difficult and frustrating getting it established into good practise for everyone.
Love to you all and keep up the good work
vivian
Hi goldengirl,
Thank you for your comment. The article essentially reiterates what we already know - that Parkinson's medications (in this case, levodopa) can have a side effect of risk-taking impulsive and compulsive behaviours. It is interesting that this was observed in 'healthy' volunteers (i.e. those who did not have Parkinson's), however this just reinforces that it is the effect of the medication. It is unfortunate that they used a case study of someone who had used dopamine agonists (and most readers would not know the difference between the two types of medication) - I think this might be because they had information from a full article with Richard from last year - http://www.independent.co.uk/life-style/health-and-families/features/from-parkinsons-to-drugs-i-nearly-lost-it-all-9358757.html - and made a link themselves, but I'm only guessing here. There is no suggestion that the proportion of people experiencing impulsive and compulsive behaviours after taking levodopa medications has changed and so this continues to be an option for people for whom dopamine agonists are not appropriate.
This really highlights why it's so important for professionals who prescribe Parkinson's medication to talk to their patients (and their carers) about this side-effect and what to look out for, screen them to ensure the medication is right for them taking into account the risk of developing impulsive and compulsive behaviour and to monitor them in case it does develop and take the appropriate action. These medications are a lifeline but their entire effect needs to be taken into consideration.
Best wishes,
Suma
Thank you Suma for the clarification.
It should help convince those who deny the effect of Parkinsons meds on behaviour now it is clear that it causes the risk-taking in non-parkies.
We have always know there was some reduced risk with Levadopa but the article implied there was new information and I feared that the horror may reappear.
I agree whole-heartedly with your remarks about the need to give and gather information about the DA/OCD situation...keep up the pressure!
So nice to hear from you ,Vivien, and I hope your hubby improves when he is free of the Requip.
I know your life is hard and you are strong.
Try to keep in touch as we care what happens to you both.
Love
GG
I havn't noticed any change in impulsiness.I do feel better off requip.My jerks are better and alot less constipation,Over all i feel better.I would look up patients like me .org as they have helped alot zeroing in on sideffects form requip.(jerks and constipation).Sinemet does have a effect to make one at peace.I always feelat the top of the world shortly after my morning dose.Exercise is also very important to keep us going.Fishing season is getting going.Lots of fish to be caught for those winter stories.haha
Have a wonderful summer
john
Hello Golden Girl
I cant find the words to give you dear friend, for they wont make the pain go away ,just think of all your friends here on this forum all of them wishing all good things for both of you I cant imagine the shock and distress on discovering your husbands desperate attempt to escape his demons it must be awful I will place a stone on Cheviot this monday, some friends have volunteered to assist me to the summit it must be 35yrs since I sat upon Northumberlands highest , there was a cairn and if it still exists I will place a stone on or in it while thinking of you both, I hope they know what their in for. I have a heavy duty Quad but they take some handling
Kindest Regards FED
Hello GG,
Have just read all 16 pages of this 'thread'.......don't know how I've missed them before!
You have certainly been to hell and back and I marvel at your persistence and knowledge about DAs. It really angers me that we have to research these meds. for ourselves and that the so called professionals don't have a clue, mostly.
I am 67 and was diagnosed with PD 4yrs. ago. I was put on 10mg. of Elderpryl at first and a year later RequipXL was added. I started on 2mg. slowly increasing to 12mg. Initially I thought it helped, but after a while my right ankle became very swollen and my eyesight deteriorated badly. My optician could not understand why this was happening. I also started ordering loads of things on eBay, but kept it very secretive. My PD nurse asked me each time I saw her, whether I had any compulsions or hyper sexual tendencies and I would say No. Thank god, I began to realise this drug wasn't doing me any favours. Apart from the things I've mentioned, I felt kind of spaced out and not like me at all. The final blow was that my driving licence was not renewed as a result of me taking this drug! My neurologist was no help at all and offered no support when I decided to come off the RequipXL. I reduced the amount slowly over several months and saw an immediate improvement in my eyesight, swollen ankle and general well being. I also stopped buying unnecessary things!
Having no faith or confidence in my hospital care, I took matters into my own hands, complained to PALS, changed hospitals and began my own research. (My GP supported me throughout). I began a 6 month trial of natural Levodopa, Mucuna Pruriens, but continued taking the Elderpryl. I felt some initial benefit, but it wasn't consistent.
Eventually my new neurologist suggested Madopar and I agreed. Four months on and I feel so much better. I intend to increase this very slowly and use Mucuna Pruriens as a supplement when needed.
I was never told about the horrendous side effects of DAs and have learnt so much from your posts GG. You are an inspiration and mentor to the cause. I only hope that things improve for you and your OH.
Thank you so much.
Twinks.
Dearest Twinks and Fed
I am grateful for all your kind words and good wishes.
My husband attempted suicide in 2014 , 14 years into his PD journey and 4 years after we discovered his DA-fuelled life had reached such depths...and the post was from then....we are much better now but the medical help was very poor.
The month in a psychiatric hospital was just weeks of confusion and argument. I had to educate myself and then the staff...
i share your concern Twinks that the warnings are still not being given and the victims not supported through withdrawal in many cases...I am so sorry you had to find your own way out of this maze...
Another new victim has begun posting in our forum and it breaks my heart to see another marriage in tatters and so much distress caused.
The drug companies' profits are all that matter.....
But we all have each other and that is more important ..my life was saved by the support I received on here in those early days in 2010 when I thrashed around in pain and bewilderment.
Long may we continue to be here for each other.
I look forward to the peace that I will have when you place our stone, Fed...
Love
GG
Hello GG
I feel ashamed to be human at times you went through hell the same hell as my dear wife who is still by side she must really love me , I was just looking through my medical notes which I have been keeping since 18yrs , im now 66 and the amount and variety of medicines taken in that period of time amount to many hundreds,, its no wonder the door was left wide for parky to slip in and wreck my life
so much damage so much waste, I hope things are better for you now
Your FRIENDFED
Dearest Fed
Life is better now than it was but it was a long, hard struggle with many set-backs.
But it does prove that things can get better, if we ask for help and try to explain honestly what is happening to us.
Your wife has stuck it out...she sees the good man inside.
She loves you.
Stay strong and fight on.
Love from your friend,
GG
