Just a few days ago I received some pretty life changing news. I’ve always been a person who got pretty bad migraines while dealing with PMS and ovulation cycles, but they would only last a few hours and went away with proper medication. And this all started with what I assumed was the same thing….but then 5 days later…it hadn’t gone away. I was determined to just deal with it, went to work through it, and hung out with friends…all to break down by the time I got home in severe pain.
Finally I was convinced to go to the hospital, which, i never like to do because I’ve spent my entire life having doctors tell me that there is nothing wrong with me despite my buckets full of symptoms I’ve always dealt with. (which, with the creation of this blog, i may finally list out, even if no one else pays attention.) I assumed this would be the same. It was just a headache after all right? And thats how the Triage staff at the hospital saw it too. I was pushed back in the line to be seen for nearly 6 hours. I arrived at 7pm, and didn’t get seen by a doctor till nearly midnight, and didn’t receive any medication or lab tests until 1am, then it was nearly 2am by the time they finally took me for a CT scan. Upon receving the scan, they promptly came back, and I guess in this sense I was lucky because the doctor on hand and actually knew what was wrong, and was able to explain it and refer me to a neurologist that could further assist me.
Of course when he explained to me what Chiari Malformation was, I was half asleep and kind of doped up so it didn’t really sit in for me or my father what he was actually talking about.
So I got up in the morning and decided to research this thing he was talking about…….I broke down almost instantly. I had no idea while sitting in that hospital bed that I was being given a diagnosis of a chronic illness…and the doctors nonchalant manor of telling me was no indication. his attitude was so “oh this isn’t really a deal but you should still have it checked out.
Needless to say my headache has NOT gone away, and it doesn’t seem like it will anytime soon. I’m doing all I can to learn more about this on my own considering i can’t get in with the neurologist for two months. I did get lucky however, in a support system. My partner has been living with EDS, so he understands what this is like, and how hard it is. Still, despite that, I feel pretty alone….and hopefully, I can find some more support and help.
In short I still really have no idea what is really going on or what type I have (I'm assuming Type one from what I've learned.)