meds

[daveyno9]

i am taking 14 mgms of ropinarole slow release which i used to take at 8am i also take 3 madopar 1@ 7am 1@ 1pm 1@7pm but thy made me feel dope up & drowsy a lot of the day now i have changed the ropinarole to 10 pm i sleep well wake up with a bit of a hangover but i dont feel doped up all day it took 2 wks to change over but its well worth it the madopar stays the same + an extra 1 if i need it

[Hidden]

I like the idea of an extra Madopar if you need it.

[Pelley]

I've been dealing with PD for about a decade. about 8 years and a DBS unit later my Neuro at Mayo (the 3rd resident I've trained) told me "You're your own Neuro." Meaning only I know what my body feels like and am more than capable of making dosage and timimg changes for sure.

[olpilot in reply to Pelley]

You are lucky to have someone who listens to you so well.

[Pelley]

WE've been through a lot together. I really try to help train the residents they way (I'm sure they need me!) but seriously it takes a good understanding and working relationship between your Neuro/Movement disorder and yourself. I think it is more valuable than the drugs themselves!

[etterus in reply to Pelley]

You are sooo right. If the Doc's are not listening, communicating and caring, nothing helps.

[daveyno9]

i will say my pd nurse is invaluable she takes care of my meds & she has always toldme to decide myself which way to approach my meds i discuss everything with her first & she has always suggested which drugs & what strengths to take without her i would be totaly lost

[tmhiggs]

dave, i take anywhere between 9 - 12 pramipexole dihydr .25 mg every day with 9 - 12 carbidoppa/levo 25 - 100 mg every day and alot of times i think the meds make me feel worse, esp in between doses (not sure if my body is getting too much meds or what ) does the madopar replace the carbidopa/levo?and im not sure which one of the meds make me feel this way . im wondering if i should talk to dr. about cutting down some. and alot of times when i take a does i feel worse before better..... stiffer and more slow and more of unsteady gait.....can hardly walk or it doesn't work at all and if does it is short lived and other time it works great for the full 2 hrs.. maybe a lil more, but not much.

[tmhiggs]

i really feel like i get no where thou with my doc bec we've been playing around with the meds and my dosing since my diagnosis in 2009. all he ever really does increase my meds with an occasional different pill to see how that affects and it seems like whenever they make a change it messes me up for a few til my body adj to the new med.

[daveyno9]

i couldnt take pramipexole it made me feel really il so did sinamet thats why iwent to ropinarole on my nurses recomendation along with the madopar they seem to work ok but they still make me feel ill sometimes