column logo

Living with Pompe disease means I need to keep a watchful eye on any and all symptoms, such as migraines.

A few years ago, I went to the emergency room because I felt very sick. I was constantly vomiting, extremely tired, and my head hurt so badly that I couldn’t open my eyes. I was scared because I tried to eat and drink, and it wouldn’t stay down. I didn’t know what to think, so my initial thought was that I might have some kind of infection, and because the pain was coming from my head, I knew I had to get checked out. When I got to the hospital and they ran tests, it turned out that I had a severe migraine. They gave me some medicine, which I don’t remember what it was, but it made me feel better.

Read about comorbidities with Pompe

Continue Reading

I was confused to learn it was just a headache and asked if they could test again because I felt so terrible, and I knew it was no way all that was from a headache. That day was the first I learned about migraines and how people actually suffer from them, and apparently, I’m 1 of them. I have them at least once a month, and it’s so bad that it has me in tears from the pain and awful feeling. I just recently had 1, and I think it’s really worth the conversation. 

I don’t know what’s causing my chronic migraines, and that’s really bothering me. I have mentioned them to my doctor, but as we all know, doctors like to write a prescription, and that didn’t help me at all because not every drug comes in liquid form, so when my migraines come, I’m literally suffering until it decides to go away on its own. I was told to try Excedrin®,  but I couldn’t swallow the pill, and when I crushed it and tried to take it with orange juice, it wouldn’t go down because I would gag it up. The taste of it when it’s crushed is so strong I just couldn’t swallow it. 

Pompe is a muscle weakness disease, so when I deal with anything outside of Pompe, it feels like I’m struggling more than the average person. For example, catching a cold. The average healthy person can catch a cold and still go to work for a full day, take some medicine, and still be active. For me, if I catch a cold, I’m struggling to breathe, and I’m stuck in bed all day waiting for the medicine to start working. 

So when you think of chronic migraines and hear people talking about how they suffer from it and how terrible they are, it feels like my attack is worse. And this isn’t me complaining about how I suffer from health issues more than the next person, this is me saying I have to advocate for my health more. 

I have not spoken to my doctors about this issue as much as I should. I mentioned it once and was prescribed medication, but because I don’t have these migraines frequently, it’s not something I pushed for care options.

This goes back to me talking about how important it is to pay attention to your health. The worst thing you can do is ignore things because they don’t happen that often or aren’t that painful. I ended up going to the emergency room when I had my first migraine, and now I have them more often. That’s not good.