Wednesday, March 4, 2020

Starting Idebenone


My mid-day exhaustion is a serious problem. Not being able to do anything "all day" has more of an impact than you would think it would. I miss out on a lot of life by sleeping from 3PM to 6PM every day.

I talked to my new muscular neurologist about this and asked if there was some kind of "ATP Booster" that could potentially help lift my afternoon curse. (If you don't know what an ATP is, check out this short, link to Mitochondrial Disease. It's really fantastic). She suggested I try a supplement called Idebenone. Actually, she was the second person to tell me about it. The first was a brilliant man in my MD support group.

Today's my first day on it, replacing the COQ10 that I take every day... all day every day. I'll take 500mg once a day for two weeks, then two of those a day for a month to see how it goes. My hope is that I'm able to sustain my energy and make it through an entire day without a nap.
"...idebenone is thought to increase the energy production inside cells as well as protect the mitochondria (and the cell) from damage."
Now you might think "well, what's wrong with taking a nap every day? Who wouldn't love that?" I'm guessing that's what you might be thinking because once upon a time I would have thought that too. I love naps actually. But that's not what happens to me. 

What happens is my body slowly shuts down and I "crash" more than nap. My muscles get weaker, it takes more effort to talk, my short term (working) memory gets worse and it becomes difficult to focus my eyes. Once my head hits the pillow I'm out like someone chloroformed me in an Agatha Christie book. Out-out. See the difference? Not fun at all and totally mandatory for my body.

This has been happening since late October (about four months) and I'm frankly concerned about it getting worse. A one hour nap increased to two then to two and a half and now three hours is pretty common. What if one day I just can't leave the bed? These are the thoughts that scare me.

On the plus side Idebenone has had some positive results in research, so I'm hopeful. I typically respond well to new things at first, but then adjust over time and they stop working as well. But I'm strong, brave and hopeful.


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