I take a boatload of Rytary; I got kind of scared about it and asked the Dr if I could try cutting back. So I was trying the next level lower which is 100 mg below. Which seems like a lot but the higher is just awful in terms of dyskinesia and feeling bad. It just seems like too much.
But recently my health insurance company made a mistake and I ended up with no insurance for two weeks. And by the way and this may sound a little weird but your friends care about you, but don’t rely on these companies to.
I had to act fast because it was so sudden so I switched back to the leftover higher meds. And I explained it to the doctor. And he was very nice about it.
Now I’m back on track . This is the end of the second day of the lower med. I don’t seem to be responding to it very well. Or if I do it doesn’t last very long. Is a way to go backward better than just cold turkey so to speak? And maybe the lower stuff just isn’t going to work for me.I realize that also.
But does anyone have any idea how long one should try that kind of experiment? Before giving up? By the way I have messaged the doctor but there is a bit of an impenetrable wall around him sometimes. Messages tend to wait. And wait.
I wanted to spare you the gory details so this might be a little vague. Plus I’m tired :-). But just a guess or an unprofessional opinion would be wonderful. If possible.
If you comment and I don’t get back to you right away I will soon as I can.
Thank you!
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Godiv
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Do not attempt to quit cold turkey because it can cause serious problems. Taper slowly one step at a time, but only as far as your condition permits.
The best reason to reduce dosage is because a disease modifying intervention is helping. See my comment here for details: healthunlocked.com/cure-par...
i still suggest your stacking with the rytary....hang tough
Rytary is an extended-release combination of carbidopa and levodopa which lasts longer in the body than immediate-release forms of carbidopa and levodopa such as Sinemet. Rytary is usually taken three times a day max 5....impaired or altered stomach emptying /gastro issues can result in an overdose due to stacking in the GI tract....
I was also wondering if stacking was defined as too much total Levadopa for the day. So one point is not to squish the rytary frequency too close, and the other that I just mentioned might be not to panic and keep adding on levodopa if I can help it. To just wait for the Rytary to kick in.
What stacking refers to is ending up with too high a level of levodopa as a result of taking long release versions too close together in time. The plasma level over time looks something like a staircase.
If you need a quick boost, use a little bit of immediate release levodopa. I just sit and play on my computer or meditate during off times.
Will do, thank you. Beehive has been trying to get this through my head also. I went back to the higher dose of Rytary this morning and trying not to freak out about stiff painful off times. I’ll try to keep reminding myself that they are usually finite. And if I can squeeze in some exercise I would be less stiff. So even though it’s a higher dose, it makes sense because I’m not constantly trying to boost it up.
And then I have the inhalable stuff if I need a little bit also to bypass some issues. It’s the end of the day and I have bad dyskinesia. I’m going to get the high DHA fish oil if I can afford it but I’m debating about whether to take the fifth dose tonight. It would be nice not to twitch all night but then again there’s a possible issue of mobility deep in the night but I’m not going to worry about that because it may not even happen.
the only other issue is a moment is I think the higher level contributes or give me neuropathy. And my hands are so numb right now. It’s almost painful.
Actually I meant to ask if you are speaking about the DHA fish oil from Dr. Mischley’s video. I did see where you said you are thinking about getting the oil.
I think I understand better now— yes, we had talked about it. I think probably I need to not go nuts when I feel bad if that makes sense. So I’m not “ overlaying” Levodopa in order to feel better as I go from one dose to the next. so my overall total levodopa doesn’t end up so high.
I just deleted an earlier response because it didn’t make any sense. FYI :-). Later I removed the double negative from this post. I am like one step behind everything today. Sheesh.
Hi Godiv, I can understand that you want to adjust your dosage. Besides the amount of levodopa, the intake times and intervals are equally important. That's probably where you have some flexibility if you want to avoid peaks and off periods. Maybe you can indicate how you distribute your medication throughout the day and when the problems occur?
Bear with me. I’m still puzzling this out. Despite my wishes, I think it was better to go back to the original (higher) dose . I think now I can better measure if when I experience off times just with that and not a bunch of extra Levadopa clouding things. I’m assuming maybe a few days of this and I’ll be better able to answer(?).
I'm also struggling with Rytary. It seems to give me more brain fog. Anyone else have this problem? One day recently when I had a failed dose from food. I passed through end of dose dyskinesia and muscle tightness, it went away, and while my body slowed down and some tremor returned, I felt like the brain fog cleared!
When I take doses closer together, per dr. Mischleys advice, every four hours rather than five, but same total daily dose, I don't/can't stop to eat enough, or forget to, don't go to bed on time, don't sleep well. As a result, lose weight. If I miss mealtime, the extra dopamine makes me super speedy, and it feels like my brain is hijacked. I call this the dopamine monster. Its horrible to feel like i no longer have control. No gambling, spending, hypersexuality though...LOL. If I eat too close to dose, I go Off from food .
I'm back to previous dosage where I'm pretty functional in the morning, much less so in the afternoon and evening, but my brain doesnt get hijacked, just slow. Not much motivation, though.
Old schedule i'm back to:
8am and 1pm Rytary 2x145 plus 1x95
Around 3pm 1/2 IR
6pm 1 1/2 C/L ER and
bedtime 1 1/2 C/l ER.
Schedule Mischley had suggested:
8am 2x145 plus 1x95
12pm 2x145
4pm 2x145
7pm 1 1/2 c/l ER
Bedtime 1 1/2 c/l ER
I think it's partly my poor executive function (always been like that but PD makes it worse), using an every four hour schedule takes focus and tight organization, but anything that interferes with the schedule, like a Zoom meeting or appointment, and I'm missing or changing a mealtime, which either results in an overdose, (not enough food interference), or a totally failed dose (too much food interference).
BTW, even very low protein meals slow or impede med absorption, probably because I always include fats, olive or coconut oil, to gain some weight back.
I may cut back on bedtime to 1 C/L ER to see if sleep improves. I'll check in with Mischley to see if she can suggest tweaks ...
BTW, I've also bounced back and forth a few times but I think the 5 hour schedule is better, with the Off times. Getting into dopamine monster territory is frightening!
hey! I’m so sorry I missed this. Thank you so much for responding. I’ll read your post and maybe we can put our heads together lol. Thanks again so much and I’m sorry to take so long. I find myself missing or skipping a lot of things accidentally.
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