Category: treatments

Adventures with Pramipexole

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While Levodopa is the “gold standard” drug for treating Parkinson’s Disease (PD), it also has a reputation for causing dyskinesia in patients who have been using it for several years. For this reason, many people (both patients and doctors) tend to delay Levodopa therapy as long as possible, using other drugs for the first few years after diagnosis. In my case, that other drug was Pramipexole (generic Mirapex).

I started taking Pramipexole (which I have nicknamed Prami) immediately after being diagnosed with PD. That would mean I started taking it in early 2015. The timing was interesting, as I had already planned a casino trip for the following weekend, and the doctor warned me that Prami sometimes causes impulsive behaviors – specifically in regard to gambling. When I arrived at the casino, I very quickly lost my life savings, my house, my dog, my sense of wonder, and all the hubcaps I managed to steal off cars in the casino parking lot. Not really. I gambled and lost a small amount of money – only the amount I had budgeted to lose. But not all was well. I was experiencing an anxiety that felt different from any anxiety I had previously experienced – definitely drug-induced. I called my doctor’s office to let them know about this awful side effect. (I didn’t mention to them that I was calling from a casino.) They advised that I should cut my daily dose in half for about a week, then return to the “full dose” – in other words, I needed to ease myself onto the stuff.

So ease I did. Once I had stabilized on the prescribed dosage (which took a couple weeks), Prami and I got along just fine…except for the incident where Prami decided to scare the crap outta me. Here’s how that joyousness went down: I was driving my car, in fairly heavy traffic, so not moving fast at all. Suddenly I felt kind of a numbness in the middle of my spine, and I COULD NOT MOVE. Fortunately, this was an instantaneous event, lasting no more than a second. Now I imagine that momentarily feeling paralyzed would be unsettling in just about any situation, but when it occurs while driving, well that’s just plain scary. This actually happened twice during my first year of Pramipexole use. It has now been at least five years since the second such incident; I’ve been on Prami that whole time, and nothing remotely like these two incidents has happened since.

I have more to say about my ongoing experiences with Prami, but I will leave that for a future post.

More Insomnia

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I decided to finally try ZzzQuil; it seems like there are multiple varieties of ZzzQuil out there, with different active ingredients. The variety I initially looked at, listed melatonin as the active ingredient. This is why I hadn’t tried it before now, as I had already tried melatonin supplements with little luck. Then recently, I heard an ad for ZzzQuil that said something vague that I don’t remember at all, but I remember the ad made it sound like there was an actual drug (not just a “dietary supplement”) in the product. So I went back to the pharmacy and this time I found a variety that lists diphenhydramine as the active ingredient. Now THAT sounds like a drug.

The first night, I took the recommended dose at bedtime. I ended up getting nearly six hours of sleep, which is better than I had gotten the previous few nights, but still had me wide awake at 3:30 AM. So the next night, I decided not to take ZzzQuil at bedtime. Instead, I took it in the middle of the night, after I had slept awhile and awakened far too early. This resulted in about seven and a half hours of total sleep, but it was not continuous, and the quality/depth of the sleep was not very good. I’ll keep trying it this way over the next couple days, though. My next appointment with my Parkinson’s specialist is on Monday. I’ll ask him about prescription sleep aids.

Unrelated thought:

I’ve often heard magma referred to as molten rock, but nobody ever refers to water as molten ice. Why is that?

Mannitol

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I brought my laptop out onto the back patio, for some peaceful writing time. And as soon as I sat down, some hoser across the pond fires up his leafblower. I think I now understand how dogs feel about vacuum cleaners. The dude is blowing leaves off his roof – which my new roof’s warranty says I’m supposed to do. Life is like a box of liquid shits. Sorry. I shouldn’t mention liquid shits on a blog about Parkinson’s. Some of you would probably give your left arm just to experience diarrhea again.

Speaking of which, I haven’t addressed mannitol in this blog yet. Two or three years ago, I kept seeing links to a news story about a study in Israel where mannitol was found to help reduce Parkinson’s symptoms. So I did a little research. I learned that mannitol is an “alcohol sugar” (whatever that means) and that it is used to reduce swelling of the brain in cases of head trauma. I also found that it’s available without a prescription and can easily be found on Amazon. So I ordered some, and the results have been excellent! For some things. It did NOT help with motor symptoms, fatigue, or sleep issues. But I (temporarily) got my sense of smell back, my speech became louder and clearer, and (most important in my case) it all but eliminated the “urinary urgency” that I had been dealing with! But the very first thing I learned after trying mannitol was that it is a potent laxative. So I highly recommend mannitol to all my fellow Parkies, with the caveat that it should be taken in small doses throughout the day rather than all at once.

Big Bucks for Booze Barons

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I stopped drinking when I started my latest medication (GoCovri). If you read the fine print that comes with medicines, you’ll find that an awful lot of them say you should avoid alcohol while taking the drug. Usually, this is just a generic warning – a Mr. Mackey “alcohol is bad, mmkay” kind of thing. But in the case of my latest meds, I found documentation that specifically explains what could happen, with enough detail to where it’s actually believable. So I stopped.

This got me to thinking: how many people are there who aren’t drinking (or aren’t drinking as much) simply because of the medications they’re on? There’s gotta be millions of us! Now what if, instead of just coming up with drugs to perpetually treat the symptoms, someone were to discover an actual cure for diabetes, Parkinson’s, etc.? Millions of newly cured people could come off their meds, which would allow them to start boozing it up again, leading to BILLIONS of dollars of additional profits for the alcohol industry. So, to the big bucks boys of the booze business (the likes of @AnheuserBusch, @BACARDI, and others), please invest in medical research aimed at finding actual cures…you WILL reap the benefits!

GOCOVRI: It begins

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A few weeks ago, I started a new Parkinson’s medication called GoCovri. This is in addition to (not a replacement for) the two other Parkinson’s meds that I’m already on. It’s supposed to reduce my “off” periods. Initially, it seemed like it was working quite well. I was feeling more awake and productive than I had felt in quite awhile. But it seems less consistent now, and I am also experiencing a nagging anxiety, which has led to me taking anti-anxiety meds far more often than in the past. I’ll probably try to wean myself off the GoCovri over the next couple weeks, to try to gain a clearer picture of the effects it’s really having (both good and bad). In the meantime, here’s some impromptu fiction:

My dog writes poetry. Some of it is serious stuff, but he mostly writes ribald limericks. Like the one about the young woman from Nantucket and her encounter with Lord Yuck. Mind you, these poems don’t adhere to classic limerick form. Many of them are 900 lines long and have no rhymes whatsoever. But, y’know, he’s a dog. What the Hell do you expect?