[mamagoo]

does anyone know how to get off mirapex been on max dosage. Movement neuro wants me off it but said it wuld take 6-8 weeks... got the new script to stop with and will be done with it in 3 weeks????

Let me know if you have been on and stopped this what can I expect to happen?

thanks in advance for any help


was suggested I post this over here again thanks for any info

[mamagoo]

"I am now on week 2 of the step down as of today and only taking 1mg bid. Had a headache but just took tylenol extra strength and it eased enough to tolerate. So today hasnt been to bad. Leg is clenching harder so think probably there will be a cramping spell to come. head is doing better, part of the problem i have been having is that my right eye from time to time will get double vision and it is cockeyed across not side by side but at angle across my straight vision. this has been going on since the "fly vision" when they tried to put me on lyrica.
I am eating my fava beans and until I get a reason that I shouldnt then I will continue but MDS did not say I shouldnt be eating them. Not sure if it is related or not but since started the beans I have not had a bout of my liver dumping a ton of bile into my stomach so that alone is a blessing.
Hope this helps if I can get an answer as to what the changes are I will post them.
Good luck and God Bless."

Last night again the sharp pains through my head about 1" above ears, ended up taking tramadol as the tylenol didnt touch it. I passed out from the tramadol (low tolerance to pain meds) This morning I can see straight again no double vision at all dull headache so hoping all goes well. So far leg is still relaxing after the muscle contractions and will Pray that keeps happening too.

[mamagoo]

well today was h e double toothpicks, world turned into a kaleidoscope again and head been pounding all day. Leg is going nuts trying to decide if it is going to cramp up hard or not. Called PCP and not going to drop to 0.50mg bid on monday morning going to do another week of the 1mg bid to see if brain adjust better before next step down. Was so bad this morning that I got sick to my stomach and headed to hug the china. PCP wanted me to check BP and if up to take my morning bp med w/evening one if needed. think it is going to either be a long night or a tramadol/valium one as the skelaxtin is not calming my leg down and the contractions are getting worse feels like my quads are trying to tear my thigh off my leg.
this has to be the worst week headaches are aweful.

[Fiona]

Hello there. You didn't mention, as far as I could tell, how long you had been taking Mirapex....1.5 is on the lower dosage side for Parkinson's (at least in my experience...) - don't know if you're taking it for RLS or...? I was on a huge amount of Mirapex for quite a while, and getting off it for me was harder than I imagined - took me about two years ultimately!!! Wish I had a good suggestion for you other than to go slow if you can, get as much emotional support as you can, and know that your brain CAN readjust in time. And there will be ups and downs. ANd know that other people have done it and now don't regret it at all. Hope that helps a little anyway.
best,
Fiona

[mamagoo]

I have been taking it since Jan started off at half a 0.25mg once a day and then it was increased up to 1.5mg 3 times a day in a 2 week period. i have segmental spinal myoclonus (quad and hamstring nerve root damage from an epidural post op pain control) the local docs (PCP and neuro) have been throwing pills at it left and right since it started jerking and at times "flopping around like a fish out of water)basically non stop back in Jan. My MDN wants me off the mirapex, had also been on keppra but off that now. It was suggested that I post this over here since more likely to find someone who has come off it here than in the movement disorder forum.

[mamagoo]

Leg cramped up most all of Saturday and so was valium and passed out...head still hurting like h e -- but am going to work as have to put money in the bank for the collection agency since they have garnished not only my pay check but my bank account so that leaves me with NOTHING!!
Just have to love the loop holes in NE law. They can only take a part of your paycheck but then they can also take your bank account which you have to have to get your paycheck as they only do direct deposit... no way to start a new account since no money to put in a different bank to have the paycheck direct deposited into... wow AINT LIFE GRAND!!!
And all this to pay the medical bills I wouldnt have had if that idiot wouldnt have stuck the epidural in my spine to begin with ..

[mamagoo]

Well, tomorrow I drop down in dosage again...today no pain in head at all... but it is apparent that I have been sleep eating since I found 3/4 of a sandwich in my bed when I woke up yesterday and i dont even remember getting up. But my son said he saw me making it. Which may explain the crumbs I have been finding in my bed lol
I will be down to 0.50mg twice a day starting in the morning.

[mamagoo]

my wacky vision is getting better still have an occassional cockeyed peripheral vision double vision but it is getting better. The telephone poles stayed in the ditch the last 2 days instead of angled across in front of me going down the highway.
Don't know if it really is helping but seems like if I drink coffee instead of water it lessens the headaches.
If anyone has anything else that may help them please please please let me know... I'm down to one day at work till Jan 1 that I can miss without getting fired because of attendance.
Leg actually seems calmer with the lower dose of drugs. Only had a couple times when it has cramped up or gone into rocket speed of bouncing.
Last evening with my son following just in case, I left Johnny Walker Red in the house and walked out to my garden. Leg was shaking pretty good and ended up taking a skelaxin as it started to cramp but IT WAS WORTH IT!!!!

[mamagoo]

instead of stopping on monday... I have not taken any mirapex today... Monday I have to work... have today and tomorrow off so will see how it goes. Feeling very jittery inside and my leg is actually better now than when I was taking 1.5mg three times a day.
Headaches are less since getting down to the 0.5mg a day. Vision is wonder occassionally will have the cockeyed double vision but doing pretty good.
Leg feels weaker but will take that over all the other symptoms I have been having since they started trying to drug it to stop doing what it is back to doing now. Just doing the contraction/relax and yesterday it was even completely still for a time.
9 months of drugs and I am back to where I was at the beginning... no drugs well almost since still need to get last of mirapex out of system but I feel better now than I have. No blinking out, rare crazy vision.. and I am able to walk a bit without the walker.

[Fiona]

mamagoo, others have done it and you can, too. Thanks for keeping us posted. It can feel like such a lonely journey but you're not alone.
Fiona