The Destruction

Hello  appologies for late reply but  the  post  was replied to no 32,   I did  wonder could it be post  30, which  was  from  me  no32  was  from Gus  if I am assuming wrongly  please  excuse  this mail,  and  may  you  have  a  great  christmas sir and  I do gather  strength  from  your concern so  thankyou.

                                                          Kindest Regards         FED

coolHello Gus

                                Do you still reside in Weymouth  , my multi millionaire Aunt lives at Preston and we may pop down to  see her in may june  ish  we could meet up  for  a lemonade or three, hope you havee  had  a  good  christmas , take  care  buddy

                                                                                    RegardsFED

 

 

Yeah sure love to fed we could add a ice cube or two when we were kids we used to call one street at Preston millionares row should be great weather down here in june.we got are turkey from m&s this as we had some vouchers to use £50 worth so we bought 10-12 person stuffed turkey crown £48 yeah you can tell it was fed rose's and not sh.t who would have thought it.any way back to asda next yr merry Christmas to you and your family good new year cheers buddy

And  to  you  and  family Gus it was  a bit  of a sad  one  here  at FED  TOWERS as  Mam  used  to come   to  us  every  christmas,  we  set  her  a  place at the  table (just  in  case) but as long as I have my wife  by  my  side  I will  survive,  all the  best mate.

                                                                      FEDcoolits sunny  here 

hi,

i take a dopamine antagonist and at first i was wondering what the fuss was about but the last 3 months have been hell.   I have turned into a shopping, gambling maniac and ruined myself financially - please beware of these drugs everyone

Been there done it i had to go bankrupt due to premiprezole used to get up in the night while my wife was asleep and go on the net gambling and shopping my consultant and wife only found out when they started warning people about it as it was on the news, if they never brought it to the news and papers that was about 5yrs ago i reckon i would have lost alot more than money .stay clear of them there are better drugs out there to take then this one

Dearest juju

I am so sorry to hear this.

My husband went down this path  for 3 years and our lives were ruined.

At least you realised within a few months so the damage will be limited.

Have you come off the drugs?

That  is the only way to stop it...slowly come off  and replace with something else, usually Sinemet.We had counselling from a neuropsychologist and that helped.

You do need help in understanding what has happened to you and how to deal with the fallout.

I am beginning to think that everyone on these horrific drugs will go this route, it's just a matter of time...

There is no compensation or apology from the greedy makers of these destructive drugs, no acknowledgement of the tens of thousands of ruined lives and relationships.

My heart goes out to you.

Love

GG

Hi golden Girl Can you tell me whether your husband has suffered dyskinesias with the sinemet and if so what remedies you're obviously excellent neurologist may have tried. I am on8mg patches along with for cinema today which I started with much reluctance because even with 4 sineme today and I am already getting bouts of dyskinesia which are exhausting. I was diagnosed just under 8 years ago and I have checked tan equivalence table so it is unlikely I am over medicated. By the way I have read a very interesting research article which identifies the carbidopa as a culprit as dyskinesias work according to them dyskinesias were unknown before that was added to the tablet and overlooked in any consideration of the effects of levadopa therapy because you cannot get levodopa on its own and levodopa preparations are treated as synonymous with s i n em e t.

Hi Eileenpatricia

I am sorry you are facing these difficulties.My husband has had Parkinson's for 16 years.

The first 10 he took Ropinirole and then Requip XL.He has not had dyskinesia so I have no real idea about why it happens in some but not others.

I wonder if it is related to how often you take Sinemet?

Our neurologist believes in little and often doses of Sinemet.

You establish a regime by taking doses as soon as you feel wearing off happening so the you are on continuously , then you keep reducing the dose until it begins to be ineffective.

A dispersible Madopar is taken when you need a rescue boost to give extra oomph very quickly....such as leaving the cinema in a crowd or when you have eaten a large meal in a restaurant and the Sinemet can't get through.

The little and often approach seems to smooth out the amount in the system but there are drugs that provide slow release Sinemet-style drug such as Rytary, very popular in the USA but too expensive for us !

Also, something known as the Accordian pill, but not likely to be made available here as expensive.

We can spend billions on killing people but not improving  lives!

I don't know if any of this helps but keeping the Sinemet level in the system seems to help...

Take care

Love

GG

 

I have suffered with dyskinesa for yrs thats why i had dbs to reduce the amount of sinemet which worked really well for years untiĺ last year when my off time reduced to 2 to 3 hrs aday my nero added azilect which worked unbelievable alot of people on this forum have had great outcome on this tablet , he also aďded entacapone to make my sinemet last longer golden girl as gave me some great advice and little and often is the best i take sinemet every 2hrs to split up mòre to give me more of an even steady day even tho I'm 125mg 4x times a day and 62.5mg x 4 times aday i know it's alot but it's like gg said experiment with your meds and your find a good amount alot of nero and pd nurses let you do this as your the only person that knows how your body feels.just keep them informed.

Hi JUJU, 

Have you spoken to your GP or specialist about what has been happening recently? I don't want to jump in offering you advice but please know that you don't have to live with that. It might be a possibility to look in to other medication or to look at the dose of the one you are currently taking. 

Kat

Hi Goldengirl,

Thanks for your reply which I have just come across - I still  dont find this site very user friendly.


Ii haven't exactly experienced  thh marked wearing off which others experience but lately my response to meds seems to vary from day to day.  I have, after several attempts to see a  pattern decided that I have become even more sensitive to the amount of sinemet at any one time.  So as I now see you suggested I have started taking half the dose every 3 hours(12.5/100) which gave me best part of a day of peace today after two  days  of  almost continuous dyskinesia.. its bot so much the writhing as the muscle tension which comes with that is difficult to deal with.  Indeed I dont know how others deal with this for years.  However, theres the problem of of needing more meds when   I am going to do  the  exercise I know  does me good..  I am due to see the PD nurse next month but I may have to bring it forward if I can..  I came across a trick this evening  to interrupt the cycle of writhing  and it worked like magic.  You press the forefinger and thumb of each hand  firmly together a bit like when people pretentiously emphasise a debating point and bingo It  stopped the involuntary movements and they did not start up again as by then it was several hours after I had taken the offending dose of sinemet prior to going to the  gymn .  I thought it might be difficult to stick to  a 3 hour regime but it is a lot easier than 3½ hrs between pills which is what I have been trying to do. 

Hi All,

 


Why on earth on a site for PWP's is the edit time limited at all,, never mind 2 minutes!!!!


I do know about drafting your  post elsewhere and copy/pasting it. but you still notice errors or additions you want to make after posting.

 

 

 

Hi Eileenpatricia

I am glad that you are finding a way through the Meds maze!

Taking meds in smaller doses nearer together does seem to work for a lot of patients.

My husband takes his every 2 hours...you do get used to it and a digital pill box round his neck bleeps to remind him!

A dispersible  Madopar as a boost works for him...just take it 10 minutes before your exercise class starts.

Good luck with the experimenting!

Love

GG

 

Hi gg what was them sleeping tablets called was going to private message you but to much hassle on this new forum setout it's fine on my laptop top but it's a mine field now really not liking this like you say having pd is enough without this crap sorry

Couldn't agree more Gus...and I haven't got Parkinsons!

The sleeping pills are Melatonin.....available in the USA and many other countries without a prescription but prescription only here.

It is a hormone that occurs naturally in our bodies and sends us to sleep.

I understand that doctors in the UK can prescribe it and many do, with good results.

It only gets you off to sleep, it doesn't keep you asleep and so it has no effects like woolly head the next day.

I buy them when I visit America in any pharmacy and use them occasionally .

I have not read anything to suggest they can't be used alongside Parkinsons meds but  maybe get the pharmacist or doctor to check!

Sweet dreams!

Love

GG

Thank you everyone for your concern.  I will be reducing the pramipexole to slowly come off it.  I hope that I will then be myself again.  I will then have to try and fix the mess I have made whilst taking it.  It has made me feel that I am worthless and I can't understand why they still use the drug if there is an alternative.  It is hard coping with the PD and everything it throws at you, never mind the mania that the dopermine antagonists cause.  

Dearest Juju

I am so sorry that you are caught up in this horror.

Like you I cannot understand how patients are still being allowed to fall into this terrible nightmare.

Only greed explains the overprescribing, the withholding of information, the lack of warnings, monitoring and legal help.

You need expert help now...coming off can lead to withdrawal symptoms which need professional management from someone who understands the situation. My husband spent a month in hospital....

Psychological help is hard to get but ask for it.....regular sessions with a neuropsychologist over 2 years helped us .

Life will never return to a pre-DA state but we can cope.

Take care, private message me if I can help.

Love

GG