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I have been suffering from insomnia for a few years now, to the point where my body has become used to just a few hours of sleep. But I still suffer from the side effects of not getting enough sleep. 

This is something that I have mentioned to my doctors, who prescribed melatonin, but I hate taking it because it makes me drowsy, and I occasionally wake up with a headache. So, for the most part, I don’t try to force myself to fall asleep. The sleeping aid just doesn’t work for me. I stay up as late as I can and fall asleep when I get sleepy, then do my best during the day on 4 hours of sleep. I drink a cup of coffee in the morning for a small boost of energy that I need to start my day.

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Even with Pompe Disease, my body learns to adapt. However, even with adapting, I’m still harming myself and I think it’s important that others with Pompe understand how important it is to get enough sleep. 

I suffer from migraines, but when I don’t get enough sleep, I do tend to get a slight headache when I awake after finally falling asleep. Most of the time, it’s because I have to wake up at a certain time and didn’t get the hours of rest I needed. As I try to drink some coffee and shake off the tiredness and fogginess, it will eventually bring on a couple of other problems within my day, like the struggle to pay attention and lack of alertness. And because I have a poor respiratory system, communication becomes a struggle because I’m too tired to gather the strength to talk.

Because Pompe causes muscle weakness, the lack of energy from not sleeping causes more muscle weakness, not to mention my already blurry vision becomes more blurry when I don’t get enough sleep. 

While I struggle with a sleep pattern, I am aware to a certain point of what causes my struggle to sleep. Before my Pompe diagnosis, it was sleep apnea. I learned through a sleep study that my breathing was off while I sleep. That resulted in using a breathing machine while I slept.

Ironically, many people suffer from sleep apnea but do not have Pompe disease. However, in my case, at this time, my struggle with sleeping can be prevented to a certain extent. The main causes for me are being inactive, drinking soda before bed, and being on my phone for long periods of time before bed. Being inactive, which is basically me spending the entire day in bed working or doing nothing active, makes it hard for me to sleep, probably because it means I’m on my phone working, eyes looking at a bright screen for hours. I don’t really know why this makes it hard for me to sleep, but I do know that when I’m active, and out of the house all day, I come home at the end of the day and can easily fall asleep. I think it’s pretty obvious why that is. 

The other thing is caffeine. Anyone should know not to drink anything with caffeine in the evening because it will keep you up all night. The last thing with being on my phone or any computer before bed is what I was told by my doctor when I mentioned my struggle with sleeping. He suggested that I turn my phone off an hour before bed.

Does that work? No, it doesn’t. Although I can spot a few reasons why it’s hard for me to fall asleep, I had to do a little research to dig deeper because those are not always the case. Sometimes I can be dealing with anxiety, depression, and even excitement. It has become very noticeable that if I have to do something exciting or scary the next day, I can’t sleep.

When I’m stressed out about something, I can’t sleep. I think if others with Pompe are having similar issues with sleeping, they should definitely consider discussing the proper medication with their doctor to help them fall asleep, as I tend to do very soon.