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.

Hallucinations

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When I was first diagnosed with Parkinson’s Disease (PD) nearly seven years ago, I knew virtually nothing about the disease. Like many, I knew that it caused tremors and that’s about it. I was shocked to learn that Parkinson’s can cause a multitude of other problems. From time to time in this blog, I will address some of these lesser-known PD symptoms. Today it will be hallucinations.

When you hear the word hallucination, what comes to mind? An acid trip with groovy patterns and colors everywhere? Or pink elephants, maybe? For many folks with PD, hallucinations are an everyday occurrence, and may be very different from what one might experience with a hallucinogenic drug. PD-induced hallucinations may be utterly convincing – not “trippy” at all – and may be as simple as seeing (very clearly) someone who isn’t actually there. But wait, there’s more! Hallucinations are not limited to “seeing things.” Tactile hallucinations are also quite common with PD, and are the extent of my personal experience with PD-induced hallucinations.

I have had three distinct types of tactile hallucination, each of which I experienced multiple times.

  1. I feel my phone vibrating in my pocket. I go to pull the phone out, only to find there’s nothing in that pocket.
  2. While walking outdoors, I feel a raindrop on my bald head. I look up, but there are no clouds to be seen. I place my hand on top of my head, and my hand finds no water.
  3. I feel a bug crawling on my arm. I look, and there’s nothing there. Well, my arm is there. But no bug.

There is now a drug on the market that is specifically intended to treat Parkinson’s-induced hallucination. However, in my case, the hallucinations stopped as soon as I started taking carbidopa / levodopa. So I started eating peyote again.

Pre-Paying for Hotel Stays

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So, we have another COVID variant out there. This one seems to be named after a Transformer (I think it’s called Megatron or something). As if I weren’t already reluctant to start planning next year’s travel. Then again, my idea for next year’s travel starts with Flerida, and I seem to recall Flerida being one of the first states to re-open after the initial COVID panic.

When that initial COVID panic hit about a year and a a half ago, I had already booked a trip to Texas for April of that year. I had pre-paid some of the hotels, through Hotwire.com. The way Hotwire worked (at the time, anyway) was that you pre-paid in order to get the lowest prices, and there was no refund if you wanted to cancel. Obviously, when the governments shut down travel, Hotwire had to refund a LOT of pre-paid hotel stays. Combine the sheer volume of people contacting them for refunds with the fact that they weren’t accustomed to giving refunds to begin with, and Hotwire turned into a gigantic rat fuck. To their credit, I got my refunds, but it took several weeks. Since then, I do NOT pre-pay hotels (unless the traditional reservation would be super expensive, or there’s just nothing available). Even once COVID becomes a thing of the past, there’s just too much of a chance that something related to Parkinson’s will pop up and force me to cancel a trip. To me, the small savings is just not worth the gamble.

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?

2022 Travel

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It occurs to me that if this is going to be a Parkinson’s Travel Blog, then I probably ought to start planning some travel. So, here’s my first draft of an extremely tentative schedule for the upcoming year.

February: Central and western Florida (Disney, Busch Gardens, Salvador Dali and Ringling Brothers museums)

April: Texas (Sand Festival, Southwest Railroad Museum, two Six Flags parks)

June: Ohio (Cedar Point & Kings Island) or Canada (Banff and Jasper national parks)

August: Vermont (Cheesemaker’s Festival, multiple museums and hikes)

October: NYC (Open House New York, multiple museums, helicopter tour)

November: Central and eastern North Carolina (Kitty Hawk, historic towns around Albemarle Sound)

In the meantime, I will continue doing Throw-Back Thursdays, where I post about places I visited during my pre-blog years.

Insomnia (cont’d)

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The giant wooden mallet did not help me sleep. It just made a few small birds appear out of nowhere and fly in circles around my head while twittering melodiously.

The problem with the insomnia is that it exacerbates other problems. Since I’m no longer working, being tired during the day isn’t that big a deal. But when I’ve gone a couple days with very little sleep, anxiety starts creeping in. And this is not the usual garden-variety background anxiety that I encounter nearly every day during my “off periods”. Serious lack of sleep can lead to serious anxiety – not quite to the level of a panic attack, but it gets close. Fortunately, I do have a supply of Lorazepam, which I take only when truly needed, and which is very effective (though far from immediate) at killing anxiety and depression.

Then there’s this:

If I want to read a book during the day or even at bedtime, I can’t get more than a couple pages into it before I start nodding off. So, when I wake up at 2 or 4 in the morning, I should be able to just read a little and I’ll go back to sleep, right? Nope. When I want reading to put me to sleep, I can read for hours – even if it’s boring reading! Same goes for TV – seems like I’m always falling asleep when I try to pay attention to a show, but if I turn on the same show in the hopes it will put me to sleep…doesn’t happen.

I find myself wondering if there have been any studies to determine how dogs can sleep so damn much.