Hi Friends
The support I get from you fellow parkies and caregivers on this forum always soothes me and keeps me going on strong with my pd journey. May God almighty continue to bless you and answer your prayers. As regards dyskinesia, if you currently have this, do not hesitate to share your experience by answering my questions above.
A big thank you in advance for your kindness.
Quote Robertson’s comment from a year ago about B1.
“I know it definitely keeps my dyskinesia away if I don't take it I get my get dyskinesia back”
Other questions that should be asked.What was your single dose of carbidopa levodopa? 25/100mg Instant Release. (1 tablet, 1.5, 2, 3, 4 or more)
How long did you use that dose?
My husband does get it but not all the time. Never sure if it’s too much C/L or not enough! Takes Amantadine and it definitely helps after the morning round of pills then takes it after lunch. Sometimes by the early evening he gets additional movement, like restless legs, or facial movement but it really varies and isn’t every evening. It definitely isn’t as severe since he took Amantadine.
Hi Zella23. How much levadopa per day is your husband taking. Is he experiencing any off time, how much. How much Amantadine is he taking ? The jury is still out regarding dyskenesia being caused by the meds we take. Or perhaps a progression of the disease itself. My vote says it is medication induced - just my opinion (JMO)
He takes Madopar, Rasagaline and Amantadine.Madopar about 7 30 am 50/12.5 with a Rasagaline.
Amantadine 100 mgsafter breakfast
Madopar at 11 30 100/25.
Amantadine 100gms after lunch
Madopar at 3.30 was taking a half dose but this week just tried a 100/25
Sometimes takes a 50/12.5 Madopar at 6 30 pm
He doesn’t really have on and off times that he notices. He sometimes notices a bit more tremor or is not so good on computer mouse.
Dyskinesia mostly facial movements can appear just before he takes Amantadine, that does stop it. Early evening dyskinesia can come and go mostly facial, some restless legs.
Terrazozin at night for BP and BPH
Sleeps well only wakes up to go to the toilet.
Dx in 2015 but probably had it for 9 years. Initially only took 100/25 Madopar for 4 years 3 or 4 times a day.
Changed Neuro and he added Rasagaline and then Amantadine but lowered C/L, dose.
His recent face to face visit to the Neuro went well and he was amazed how he was managing on a small amount of meds but said if he was happy on that then that was fine.
Takes B1 and uses red light hat from men’s shed Tasmania since last August.
All the time quite mild but it's there and Bearable
Amandine helped me a lot
I have read a lot about Amantadine. Thanks anyway.
Sorry my spelling was incorrect, it’s Amantadine, this and no C/L after 5pm
Definitely if I take too much Sinemet, my dyskinesia is worse. I Take half a tablet of the recommended dose,, and that helps to limit dyskinesia. But then of course the Parkinson’s symptoms of slowness and stiffness become more problematic. It is a balancing game for me. But From my experience I think too much medication causes the dyskinesia.
Hi OREOLU! GREAT NAME great cookie my favourite. Won't bore you with details but amantadine caused me some very unpleasant orthostatic hypotension. Until I knew what was going on, I would pass out or come close to it. Make sure you stay well hydrated.I am taking GOCOVRI, a brand name for generic amantadine. GOCOVERI is the time release version. I'm taking Ongentys (opicapone)
because my levodopa is wearing off too soon and without notice. I posted earlier on my use of both of these meds. I take ONGENTYS one 50 mg capsule at bedtime on an empty stomach. I take Gocovri one 137mg capsule at bedtime. The normal Gocovri dose is two 137mg capsules. GOCOVERI is also available in 68.5 mg capsules. I'm taking one 68.5mg capsule two times per day. This is still a work in progress. The one 137mg capsule wasn't making it to late afternoon. My Neuro didn't want to put me on two capsules 137 mg because of orthostatic hypotension. We'll get the right dose. Smart man my neurologist!
Thank you very much for your detailed response. I am trying as much as possible to limit my medication intake, but PD is such an ass...... of a disease. I suffered from OH too when I started taking 12 capsules of Rytary, and was bridging with sinemet during wearing off and delayed "kicking in" of medications. It was terrible, at that time. I would not want any medication that would give me orthostatic hypotension again. However, it seems most PD medications tends to decrease blood pressure, so one as to be very careful. I do take my blood pressure measurement everyday.
Two things have really helped my dad:
- reducing the amount of Sinemet + Neuropro he takes (he is down to 3 tablets a day and 6mg of the patch)
- As recommended in Dr. Mischley's PD School, pd-school.teachable.com/
High Dose Omega 3 Fish Oil (He takes 7 of these capsules a day!! myaquaomega.ca/products/hig...
How do you know when to go to emergency when PD symptoms are beyond erratic? 
Does anyone else have eyelid tremors? And what do you do to stop them?
How many doctors do you guys have?
Some have suggested we add agenda items to our Zoom meetings. How do you feel about that & do you have any suggested items? 
Does B1 make you tired?
