PD Med Experiences
 

Hi - I'm new to the site. My wife has had PD since before she was diagnosed in 1995. We just didn't recognize the symptoms at that time. She is now 72. She is on quite a few medications and has a variety of symptoms.
I'm hoping this thread will attract other PD patients and care-givers so we can share our experiences with the medications, side effects, and the symptoms of the disease.
My wife (aka Lainee) takes Sinemet, Amantadine, Comtan, Mirapex, Sinemet ER, Parcopa (sublingual), and Apokyn. She is being evaluated for DBS surgery. She gets bad dizzy spells, with headaches and hot/cold flashes. her blood pressure is erratic fluctuating from very low (95/50) to very high (205/110).
I was wondering if anyone else was suffering these kind of symptoms? Thanks. - Rich

Welcome to the forum. To get to 26 years post diagnosis your wife must be doing something right.

Before commenting about the drug regimen it will be useful to know the time and size of each dose and each symptom.

In the meantime, you may be interested in this paper:

"An Elderly Parkinsonian Patient with Extreme Blood Pressure Fluctuations"
An Elderly Parkinsonian Patient with Extreme Blood Pressure Fluctuations - ScienceDirect.

John

My dad had BP fluctuations and orthostatic hypotension. Dizzy/ passed out and fell quite a few times after getting up from table after a meal.
We tried some protien drink first thing in the morning nd that helped, many of his falls where in the morning after breakfast.
Those falls were different from the freeze falls when meds wore off.

As dad got into his 80is we found some meds were causing more issues than benefits. Dr said it is a balancing actt, Removing the problem ones and keeping the main ones is the main goal.

Our site search tool can find past posted info on meds, symptoms also.

Thyroid and hormones could be a factor also, don't assume symptoms are always PD related..
UTIs can be missed until they become severe for older adults..
UTIs in the Elderly: Signs, Symptoms and Treatments - AgingCare.com


I would cross check all of her meds with an online interaction checker.. just to make sure...
Drug Interactions Checker - For Drugs, Food & Alcohol

i have some similar symptoms. i am taking mainly carbidopa/levodopa which is generic sinemet. 150mg every 2-3 hours. i was diagnosed 19years ago. just recently i started to experience vertigo and my walking feels like i have rubbery legs at times, my bp also can unexpectedly go high. i expect it to go lower everytime i take sinemet because i'm taking quite a bit, so your wife's symptoms don't seem that extreme for the number of years she's had pd'. i couldn't tolerate amantadine or mirapex. there is nothing out of the ordinary as far as the drugs she is taking imho nor is there another one that she isn't taking that would make a noticeable difference. my only advce would be to use mylan brand sinemet. at least for me it works better than the other generics, might cost you more but would be worth it if your wife felt better. i get all my pd drugs from an independent pharmacy, the chains won't go out of their way to supply a generic other than the cheapest one. i also noticed a difference between generic mirapexes when i took it. i started by chance with glenmark, the next fill was red colored and it made me sick. not saying your wife would benefit by trying a different generic but food for thought. i think it's the bindrers, coloring agents and fillers that might be the culprits. i agree with john, it would usefull to know the strengths and times/day each drug is taken. i;d certainly investigate a dbs if you can afford it. i was approved and backed out, a decision i highly regret.

i have some similar symptoms. i am taking mainly carbidopa/levodopa which is generic sinemet. 150mg every 2-3 hours. i was diagnosed 19years ago. just recently i started to experience vertigo and my walking feels like i have rubbery legs at times, my bp also can unexpectedly go high. i expect it to go lower everytime i take sinemet because i'm taking quite a bit, so your wife's symptoms don't seem that extreme for the number of years she's had pd'. i couldn't tolerate amantadine or mirapex. there is nothing out of the ordinary as far as the drugs she is taking imho nor is there another one that she isn't takin the nonactive ingredients tat make me nauseg that would make a noticeable difference. my only advce would be to use mylan brand sinemet. at least for me it works better than the other generics, might cost you more but would be worth it if your wife felt better. i get all my pd drugs from an independent pharmacy, the chains won't go out of their way to supply a generic other than the cheapest one. i also noticed a difference between generic mirapexes when i took it. i started by chance with glenmark, the next fill was red colored and it made me sick. not saying your wife would benefit by trying a different generic but food for thought. i think it's the bindrers, coloring agents and fillers that might be the culprits. seful to know the strengths and times/day each drug is taken. i;d certainly investigate a dbs if you can afford it. i was approved and backed out, a decision i highly regret.

Welcome RichardTC. :welcome_sign: