Getting the dose right

Although there aren't a lot of drugs that treat the symptoms of Parkinson's, there's enormous variability in how much is needed - and even if side effects can get in the way of using a medication.

The "gold standard" drug is levodopa, often teamed with carbidopa to reduce nausea and increase levodopa effectiveness.  But there's no "standard dose."  Newly diagnosed pwp will often ask, "Is this too much/too little?"  But the answer is different for everyone.

I started taking C/L (carbidopa/levodopa) about a year ago, just half a pill, three times a day.  It improves my stiffness so that it's easier to exercise, and seems to make executive functioning (multitasking like driving) a bit easier.  If I forget to take a dose, or if I take it with a handful of peanuts (protein that interferes with medication absorption), I get reminded just how stiff I can be!

I've played around with the timing that I take a dose, just because right after I take a dose, there isn't much dopamine in my system - so that's not a great time to start a physical therapy session or an exercise class.  I'm "off."

Recently, my MDS wanted to bump up my dose but without the nausea and sleepiness that often go along with that.  So I started Rytary, a controlled-release version of C/L.  I seemed to go "on" more quickly, and the nausea (right after dosing) and sleepiness (90 minutes after dosing) went away.  At roughly double the previous dose of levodopa, I was less stiff, more cheerful, and had improved small motor function (easier to type!).  Initially, the executive functioning needed for driving seemed a bit easier.

But one of the "gifts" of C/L is that it can lower blood pressure.  And higher doses can lower it more.  And I had to start sitting down more and more, even to exercise.   As soon as I broke a sweat, I felt faint - not good.  Clearly, my blood pressure was a problem.  I've already got low blood pressure, and now orthostatic hypotension, too (blood pressure drops when  I stand up, making me more likely to faint).  Movies make fainting look romantic - it's not.  Your body wants your head at ground level so your brain gets enough oxygen, and it makes that happen by treating you like a marionette whose strings are cut; your arms and legs go at all angles as you are suddenly on the floor.  You can hit your head.  Not fun.

Something had to give, and constant hydrating, extra salt, compression thigh highs were not enough.  So I switched back to the lower dose C/L.  The result?  My blood pressure is better.  Unfortunately, I'm also stiffer and more awkward, and typing is tough again.

But my mind is sharper and clearer.  Forgetting a dose here and there didn't clear out my system enough.  But a few days at the lower dose show me that my brain is clearer.  Now I know what brain fog is, now that I don't have it any more.

What do I do going forward, as my symptoms get worse, and I need more C/L?  That's a question for my MDS, for another day.

Images from Pixabay.