
To put it bluntly, I can’t fully trust the meds I take.
Let me explain.
I presently take only levodopa: 200mg at 8:30am and 150mg at 5:30pm. The morning meds kick-in at around 9am and wear-off around noon, while the evening meds kick-in around 6pm and last until 8:15. Generally, while the meds are on, when all goes well, my life is pretty much normal.
Unfortunately, I have learned it doesn’t always go the way it is supposed to for a number of reasons:
- The meds are sometimes late kicking in, especially the evening meds, and especially if I am feeling anxious or stressed.
- The meds frequently wear off early, especially if I am feeling anxious or stressed.
- Occasionally, the meds will kick-in, then kick back out again.
- The meds have a troublesome side-effect: loss of balance.
- On days when I take extra meds, I frequently don’t feel good.
- When I take extra meds, two days later, I tend to crash pretty hard.
The meds are sometimes late kicking in, especially the evening meds, and especially if I am feeling anxious or stressed:
Recently, my dinner-time meds were 45 minutes late kicking in, for no apparent reason. I have found that a little slice of apple or cucumber seems to help the meds kick in.
I did learn a few years ago that if I eat protein or animal fat within four hours of taking meds, it will delay the meds kicking in, so I avoid both. That is to say, I take my morning meds on an empty stomach and I eat a carbohydrate lunch.
The meds frequently wear off early, especially if I am feeling anxious or stressed:
I recently had an appointment with my doctor. It was scheduled for 10am, so I took my morning dose a half an hour early to give myself a little bit of a buffer. The doctor was running late … as usual … but I was prepared. I had an extra dose with me. Around 11am, I started to feel anxious, so I took the extra dose. Before the extra dose could take effect, my first dose wore off … early … and my second dose didn’t kick in after a half hour like it should have. By the time I finally saw the doctor, I was shaking badly, although, strangely enough, I could walk okay. The second dose finally kicked in a half hour after I left the doctor’s office.
Occasionally, the meds will kick-in, then kick back out again:
Every so often, my meds will kick in, then kick back out again. It seems to happen when I get up and move around as soon as my meds kick in. When this happens, I sit back down and focus on my breath until the meds kick back in again. It usually only takes a few minutes. Why this happens, I have no idea.
The meds have a troublesome side-effect: loss of balance:
It’s a different type of loss of balance than what I typically experience with Parkinson’s. I will be standing still, when all of a sudden, I start going sideways, in a circular direction. It feels like I can right myself, but I don’t, and I end up falling. I have hurt myself on a few occasion falling like this. It is very disconcerting because it happens randomly and I don’t know what to do about it.
On days when I take extra meds, I frequently don’t feel good:
I take extra meds once or twice a week when I need more time to get things done … like write a blog. Quite often, I don’t feel good … although, I am free of symptoms. I feel a little nauseous.
When I take extra meds, two days later, I tend to crash pretty hard:
The day after I take an extra dose of meds, I typically feel better during the time of day when I’m off-meds. I attribute this to the residual effect of having additional dopamine in my system. But then the following day, I feel much worse than normal as I go through the wear-off withdrawal as dopamine returns to baseline homeostasis.
The doctor who convinced me to start taking meds told me about none of these complications. It’s quite possible that she wasn’t aware of them.
All this has unfortunately left me distrusting the meds I take and feeling anxious about being out in public and attending functions for fear of the meds wearing off early or not kicking in when they should. I have learned that in certain situations I need to take extra meds or have extra meds on hand just in case. But as I discovered at the doctors office, sometimes a little extra is not quite enough.
I hope you found this information helpful.




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