Saturday, September 14, 2013

Scheduling life with Myasthenia Gravis around Mestinon Doses

by George Barron
When  I was diagnosed with myasthenia gravis, a small dose of Mestinon (15 MG) would get me through five or six hours before the mild symptoms (mostly speech difficulties) would return. It continued to be like that for about year. Not a big deal. I was beginning to think that mine would be one of the lucky cases that never got any worse. That wasn't to be the case. After three years it has become generalized with multiple symptoms and I now take 60 MG of Mestinon about every three hours. Because of that, and wanting to be as productive as possible, I've had to develop a routine that's largely based on the effective life cycle of the medication.

That life cycle boils down to three phases; how long until it begins to work, the peak performance time and   when the effects fade.

Compared to some drugs, Mestinon can be a little slow to getting on the job. While it will work quicker if taken on an empty stomach, it will also stop working sooner. It's best to take it with a little food - even if it's just with a cracker. With or without food, my three hour journey begins with the 60 MG tablet. It takes between 35 to 45 minutes before I begin to feel the effects. Then, at about an hour into it, my muscles start feeling pretty good and peak performance time begins. That gives me about an hour to an hour and and a half to get tougher jobs done. After that, the effects of the drug begin to fade.

Although my MG is generalized and can affect any muscle group, I'm particularly mindful of how it affects the muscles that I use for chewing and swallowing. A miscalculation in the timing, especially on a bad day, can make eating torturous. So most of my planning is around mealtimes. But other things must be included and planned for in order to have that 'relatively normal' life that we read so much about.

To illustrate a cycle, let's say that I wake up at 7:00 AM. Immediately I'll take a pill with the idea of eating breakfast sometime between 7:30 and 8:00. That might not seem like enough time before eating but in the morning I take a pill on an empty stomach - because I need it to work fast. Plus what I make for breakfast isn't tough to chew or swallow. The dose will kick in while having a cup of coffee and making breakfast. After breakfast the peak performance time begins. That gives generally gives me an hour and a half to exercise, shower, and get a few things done before the fade. Toward the end of the fade I'll try to rest 15 or 20 minutes before taking the next pill.

Before I started using the cycle of the Mestinon as a tool for scheduling my day, I wasn't getting much done. And it was easy to blame that on the myasthenia gravis to a large extent. Having recently retired I didn't have a routine like I had when I was working so that even made it easier to fall into the rut of not having to do anything. Maybe subconsciously, I was using the MG as an excuse not to do things. But now I've learned to use the cycle of Mestinon's effectiveness to create something of a routine and to help plan my days more productively; maybe even more effectively than if I didn't have the MG to contend with.

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